We have received reports that some people are not receiving our emails when they have been expected, for example those booked to attend the Residential Weekend. Please check your spam and junk mail folders as some email providers are incorrectly marking some of our emails as spam. This is an issue we are trying to resolve but you can help too by checking your email folders and if you find an email from us (ending with @hypermobility.org) please add it to your safe sender list.
to name a few PLUS your Local Group area name, eg London@ as your Local Group Leader will also regularly email with updates and invitations to meetings if you are an HMSA member.
If you see more than one email from us in your junk mail folder(s) please ensure you add the domain (@hypermobility.org) to your Safe Senders List AND add each email address too. This is because some providers only allow emails from those on your Safe Senders List and will filter out any others, even from the same place. You can usually do this by right-clicking the email in your mailbox and selecting the appropriate option to ‘add as safe sender‘ or ‘unmark as junk‘.
We appreciate the frustration this is causing and apologise for any inconvenience but we need your help to resolve the issue. If you receive an email and wish to unsubscribe please reply to the email stating this rather than marking it as junk, as doing so flags our emails as junk/spam for other users and causes problems when we have important information to share such as Residential Weekend booking confirmations.
Many thanks for your support, please contact me here if you have any queries regarding the above
HMSA Social Media Coordinator
HMSA Residential Weekend & Patient Conference 2014 – Update on Hydrotherapy, Physio, Children’s Programme and 1-1 Sessions
Important Information Regarding the Residential Weekend and Conference 2014
The following information has been emailed to all Delegates with confirmed bookings at this year’s Residential Weekend and Conference. For your convenience we have copied the email content below. Please ensure you read and return any relevant forms by the required date to ensure acceptance onto the programme.
Please complete the ‘Pre Participation Gym and Hydro Under18.’ form on behalf of your child and email it to firstname.lastname@example.org , marked ‘FAO of Donna’ by 21st July or inform via email you will be bringing it to the weekend. This form must be returned in order to allow your child access to the programme.
If you are over 18 please complete the ‘Aquatic_Therapy_Example_Screening_sheets.’ and return as described above.
All children/adolescents will be having a session in the gym with the FA Coaches followed by a hydrotherapy session with Dr Jane Simmonds. For your information there will not be space to allow parents to accompany children into the hydrotherapy pool. If you have concerns please discuss them with Donna and Jane on the Friday evening.
The children/adolescents programme will be available in the relevant Delegate Pack on registration. It will not be emailed out prior to the event. Neither the HMSA, our Medical Advisors or facility owners will accept liability or allow access without this form being completed.
Checking in to the Hotel
The Hilton has informed us that access to booked bedrooms is from 3pm on the 25th July 2014. The Hilton has a list of guests attending the conference. Please do not arrive at the venue before this time as your room will not be ready for check in.
Weekend Delegate Registration – Friday 25 July
- 5pm: Registration in the Sir Bobby Robson Lobby. Please do not arrive in this area before 5pm as staff will still be busy setting up and unable to assist you. Health and safety issues mean delegates cannot access this area whilst setting up is taking place.
- 6.30pm: Dinner in the Ballroom. A short speech on what to expect from the weekend and an update on what the HMSA has been doing over the previous 2 years will be given at this time.
- 8pm: ALL parents, and those adults who are participating in hydrotherapy and/or physiotherapy must attend a screening session with Jane Simmonds and Donna Wicks. Please check your timetable in your Delegate Pack to find out if you have been able to secure a hydro or physio space. Information on how the children’s programme will be run will also be given at this time.
Hydrotherapy, gym and physiotherapy sessions need mandatory physical screening beforehand. This means dependent on the results of the screening you may not be able to participate in these sessions. There is also a restriction on how many people, and how many people dependent on the hoist, can be in the pool at the same time. This means that your timings may change, so please do not view them as ‘fixed’. Again we apologise for the inconvenience. We are sure you understand that your safety is the utmost of importance to us.
We apologise for not letting you know in advance whether you have secured a space or not but the HMSA does not have the resources to email every adult delegate separately. We request that you complete and return the form ‘in case’ of being successful. Please do not call or email requesting details of whether you have been successful in booking a space as we are unable to provide this information prior to the event. You will receive this information in your Delegate Packs which are available from 5pm registration on the Friday evening or Saturday morning as detailed below.
Please email the relevant forms to Donna Wicks no later than 21st July at email@example.com Please be aware that Donna will be unable to pick up emails from the 22nd July, so it is vital that you send your forms in before that date or they will not be picked up and you may be refused access to the relevant programme.
Day Delegates can register and pick up their Delegate Packs between 8.15am-9am on the 26th July 2014. Please remember the first session starts at 9am so allow plenty of time for this and for screening to allow hydrotherapy.
We cannot take any child or adult in hydrotherapy, gym or physiotherapy, unless we receive the completed form either by email before 21st July or in printed form on the day of registration.
We have an absolutely fantastic weekend planned and do hope that you enjoy your stay. We look forward to meeting you!
In 2010/11 in England, physiotherapy outpatient services managed 1.9 million adults with a first appointment and 4.8 million follow up appointments for MSDs.(1)
Rapid access to musculoskeletal physiotherapists can reduce the amount of time people are off sick and is vital in preventing a new acute problem becoming chronic and long lasting.(2)
Physiotherapists have pioneered innovative ways of providing speedy and appropriate access within existing services.
- Over 200 types of MSD
- 1 in 4 UK adults affected by chronic MSDs
- Low back pain is reported by 80% of people at some time in their life
- MSDs are the most common reason for repeated GP consultation
- 60% of people on long term sick leave cite MSDs as cause
To read more click on link above.
Professional Membership – Welcome aboard!
This section is for any professional with an interest in joining the HMSA as a ‘Professional Member’. If you are a patient or service user please email firstname.lastname@example.org
‘The HMSA continues to grow from strength to strength as many professionals of differing disciplines seek to become members of the charity. The HMSA is now taking Professional Membership, as it believes that having the two distinct populations of those affected by hypermobility syndromes, or Heritable Connective Tissue Disorders, can only be a long term benefit. The two populations, professionals and service users, will intertwine via the HMSA and hopefully be a driver for changing attitudes to people who may be significantly affected and ‘dis-abled’ with persistent pain, fatigue and a host of multi-systemic symptoms. It is important to recognise the expertise of service users and their families when it comes to addressing the impact of these syndromes. Having access to a service user member database will enhance professional knowledge, awareness and also increase potential research opportunities. We hope that current HMSA members and professionals will see this as an exciting opportunity which should be grasped with two hands. Each can educate the other and in the end that can be a very powerful tool to aid change.’ Donna Wicks (HMSA CEO)
If you are interested in working with people who have one of the Hypermobility Syndromes or Heritable Connective Tissue Disorders we would like to invite you to apply to our new membership scheme. This scheme is suitable for any professional discipline, including researchers and students. The HMSA is a positive organisation which believes that education in the treatment and management of a hypermobility syndrome can help to empower patients. But we also know that many of our members are severely disabled by the condition and these members can benefit from professionals with an interest and a good knowledge base. Having an early diagnosis and advice from informed professionals can help to reduce the potential for disability and the negative impact that this can have on an individual’s life. The HMSA is globally recognised for its work in supporting people with a hypermobility syndrome. We are regularly contacted by professionals and experts from the UK and all over the world for information and advice. Becoming a HMSA Professional Member will mean you will be part of this network and be contributing to the knowledge base. We follow the latest Data Protection legislation so you can be sure that we keep your details securely and we always maintain confidentiality. We would never release your information without prior permission.
So what benefits will professionals receive?
- On registration each professional member will receive a sample of HMSA patient health and social care information, a certificate of membership and an official HMSA pin badge.
- Professional members will have access for advice from qualified medical, health and social care professionals who work for or with the HMSA. Primary contacts will be Dr Alan Hakim (Chief Medical Advisor) , Ms. Donna Wicks (CEO/RMN) Mrs. Jenny Parris (Education Development Cordinator/RGN)
- A copy of the twice yearly HMSA Journal in April and October. (Professionals can contribute to the Journal by submitting articles, case studies and research opportunities.)
- Quarterly professional only e-newsletter. (Professionals can submit information for the HMSA to share amongst other professionals, such as study days, conferences or research studies.)
- Additional HMSA email contact if new research or information is time sensitive.
- Assistance with recruitment for research projects, access to non-identifying patient data, dissemination and the option of the HMSA being the ‘patient partner’.
- Priority booking on professional and patient combined training and education opportunities.
- Opportunity to engage HMSA professional team for learning opportunities.
- For professional members in either NHS or private practice there is the option of having your details on a ‘contact list’ for the HMSA to use to inform patients of your services. You will need to ‘opt in’ to this on the membership form
Professional membership starts at just £48. If you would like further details please email email@example.com
Yesterday the HMSA staff, Donna Wicks (CEO) and Jenny Parris (Education Development Coordinator) attended the Masterclass Hypermobility Symposium in Hatfield.
This was a professionals study day organised by HMSA Medical Advisor Dr Jane Simmonds, and chaired by HMSA Chief Medical Advisor Dr Alan Hakim. Presentations from our Medical Advisors Dr Hana KazKaz, Professor Rodney Grahame, as well as Dr Chris Matthias and Dr Nelly Ninis were a huge hit with the 70 plus professionals from all over the UK and Europe. The workshop by HMSA Medical Advisor Rosemary Keer and another by colleagues were also well received.
It was great to be with professionals of a wide range of disciplines who were so interested in learning about the HM syndromes or Heritable Connective Tissue Disorders, many of whom paid personally to attend as funds for training are difficult to get from NHS/SS at the moment due to the cuts in budgets. We signed up 50 new professionals to our database and made plans to visit many of the services they represented to discuss the HMSA Self-Management programmes, our model showing how we work, and also to share information from the patients perspective.
It was great to catch up with some of the researchers that HMSA members have been assisting and there is new info on its way. Alice Mooney will be attending the Kent Masterclass Family Programme and will be sharing the results of her research which started with our members at the Elstree Family Day last year. May To will be at our Residential Weekend sharing information from the research at Charings Cross which many of you participated in.
The HMSA team also attended the NICE scoping of Child Abuse, which aims to produce new guidelines on safeguarding of children. We were there because we feel that being involved in the guidelines from the start will allow us to represent the fears of parents who have been falsely accused of abuse (of all types) but also to ensure that any of our children at risk would be fully supported. We also addressed the need for us, as an organisation with expertise and experience and the Information Standard which should give professionals confidence in using us (and other patient organisations of the same standing), to be ‘allowed’ formally to advise panels on safeguarding. Jenny and Donna are both qualified nurses in their own right and have extensive experience in working with vulnerable children (and adults) and whilst they are consulted by some of the panels involving safeguarding and HMS cases there is no requirement for panels to listen to information on the syndromes and the psychosocial issues around this. The same could be said of many patient organisations who have qualified health, medical, social staff working for them.
The HMSA team were also invited to speak at a Disability Forum in Herts which was very well received. It has led to a few people becoming new HMSA members, people wishing to attend the free Kent event and also to fundraise on our behalf.
This has been a very busy week for the entire HMSA team who have been working behind the scenes, on the helplines, social media and forum and in the local groups. Without this team and being a tiny charity we would not be able to function. So many thanks to you all.