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The HMSA’s ‘Giving GPs the Tools’ Campaign!

Posted By Donna Wicks, December 20, 2017

We know from anecdotal reporting and snapshot surveys, that it takes 55% of our people over ten years to gain a correct diagnosis of hypermobility spectrum disorder, previously joint hypermobility syndrome, or hypermobile Ehlers-Danlos syndrome. It is probable that a similar outcome may be seen in the other conditions we support; all Ehlers-Danlos syndromes, Osteogenesis Imperfecta, PXE, Stickler syndrome, Marfan syndrome etc.

                   (How long did it take me? I was diagnosed at 54. I had pain

                      all my life but I have only just been told what was wrong

                                                     with me.)

This 10 year journey sees our members feeling dismissed by medical professionals, who have no understanding or little knowledge, of what can often be complex and multi-systemic conditions. There is little training for medical students on the subject and post qualification training may not cover heritable disorders of connective tissue or hypermobility spectrum disorders.

                       (No-one believed me. They said it was all in my head! But

                        I knew it isn’t normal to have pain all the time! I feel so

                                                    angry…)

                     (Getting a diagnosis just shouldn’t be this hard!)

Yet we know that delays in diagnosis are costly. It can lead to a negative impact on education, employment, family and friend relationships, and increases potential for disability and distress. It can cause disruption not just for the individual but to all their loved ones; physically, emotionally, socially and economically.

The vast majority of hypermobility spectrum disorders can be, and should be, diagnosed by a GP. The diagnosis is not necessarily a complicated one but too often GPs don’t know how to diagnose or that such a diagnosis exists.

                   (I have a diagnosis! I am so relieved! I feel believed. All I am doing

                                          is sitting here crying.)

And once they make that diagnosis, they often do not know how to, or where to, start in the management of the varied systemic issues that our members can face. The HMSA is here to support this process by providing information and resources to all types of professionals, especially GPs and their patients.

 

                           (I have my diagnosis. Now what do I do? Who do I see?)

Getting a diagnosis is the first step but management is another issue altogether.  A HMSA survey in 2012 stated clearly members felt far better supported by an ‘expert in hypermobility’. This was regardless of whether it was a doctor, physio, OT etc. It was the knowledge that the professional they were seeing understood the hypermobility related components but also the certain truth that the professional they were seeing didn’t doubt their symptoms and experiences. There was an overwhelming sense of validation and relief from seeing someone they knew believed them.

                        (All I want is to be believed. There is no point in going to my GP;

                          they just fob me off with pain killers and do nothing for me.

                          I have no one to help me. I have been told I have been placed

                           in the working group for ESA. I can’t work! I sleep all the time

                                      and I can barely walk.)

Whilst we would like to see more specialist centres and more recognised ‘experts’ in all areas affected by a hypermobility syndrome, we acknowledge that in practical terms this would be difficult to achieve in the short term. What is not so difficult; is to ensure that all GP practices (and as many ‘other’ professionals too) are aware of hypermobility related disorders and HDCTs.  The HMSA hopes that with better training opportunities and by raising awareness of the hypermobility related disorders that rapid diagnoses can be made, which will reduce a lifetime of negative experiences of the patient in their health, medical and social care professionals.

                   (My child is ill. She is always tired, complaining of stomach

                   ache, feeling sick and says her legs hurt. Yet the GP says

                    there is nothing wrong and I am making my child ill!)

Some people undoubtedly will need to be seen by specialists, who may or may not be experienced or believe in hypermobility related disorders. These people will always benefit by being confident that their GP can successfully navigate alongside them, ensuring that they see the right people, at the right time. The GP with knowledge of the hypermobility spectrum disorders will be able participate in the management discussions that will need to be had.

                            (Hello, hello? I need help now. I need to speak to

                             someone urgently. My GP said there is going to be a meeting

                             about my child with school, him and her physio with social services.

                                        I haven’t done anything!)

Sadly, at the moment our community is often labelled as being neurotic and making up symptoms in ourselves and our children. Yet in the experience of the HMSA, it is the GP’s lack of knowledge on the subject of hypermobility related disorders, and the potential complexities that is the real issue.

Many parents have wrongly been referred to social services and taken through the safeguarding processes, an ordeal which causes unnecessary stress to the child, parents and extended family. The safeguarding processes involve looking into everyone in the family, whether affected by a hypermobility issue or not.

                        (I moved out of Wales to get away from everything because

                         we weren’t believed. Now I have moved here and they still don’t

                         believe me and what’s more they know about the Social Services

                         case. She is ill! I am not making her ill. Who can help me?)

This distress continues once the safeguarding process is completed; even when it is found that there is no case to answer.  Some people move away, to try and start again but find that the information is readily available wherever they go.

Parents rightly feel angry and it is not uncommon for those involved, to feel traumatised by such events. It colours their current and future relationships with health and medical professionals. Causing a lack of trust and confidence where it is so desperately needed.

 

                    (It doesn’t matter that this is supposed to be finished now. There is

                     still a file for my child, where I was accused of hurting him. Everyone knows

                     at the school and in the village. I am so embarrassed. I feel like I am being

                      judged and for what? My child was actually in hospital for 6 weeks! They said

                              he needed to be admitted, not me!)

To complicate things further depression and anxiety is high for people with these conditions. New research suggests that there is underlying biological reasons for this in hypermobility spectrum disorders. It is known that other chronic pain populations also experience high levels of depression and anxiety. But there is little recognition for those with a hypermobility related disorder where depression and anxiety can be overwhelming issues to cope with, whilst also facing other severe and debilitating symptoms.

                          (I have suffered from depression and anxiety for as long as I can

                     remember. It can be hard to get up in the morning in pain and feeling

                          like I haven’t slept. I can see no future. I don’t think anything will

                                                 change. What is the point?)

The HMSA is always here to provide support to anyone with one of the hypermobility spectrum disorders or heritable disorders of connective tissue. It doesn’t matter which one because “There is room for everyone under our umbrella!”

                                     (We want to make a difference for people who are already diagnosed

                                                            and for those who are yet to be so!) 

We believe that it is possible to ‘Give GPs the Tools’ and the resources they need to assist their patients on a daily basis. But to do this we need you to help us.

There are multiple aims for this campaign and we hope that you will feel able to support our work in assisting to raise the funds, so that we can meet the targets below.

  • We will assist  people with the conditions  we support, by providing educational resources to GPs. We will provide an introductory pack of information on all the conditions currently under the HMSA umbrella and the management of these conditions. This will reduce negative and inaccurate medical decisions, prevent and reduce inappropriate safeguarding referrals, ensure GPs have the latest evidence based information to inform their decision-making.
  • We will encourage GPs to make a diagnosis themselves, cutting down the delay for patients and allowing speedy access to services patients may need. This will also reduce the economic cost to the GP practice and allow for the patient to be confident in the ability of the GP.
  • We will assist in determining who needs to be referred to specialist services, whether local or national. We will do so by providing a clear pathway, enabling GPs to assist patients in being sent to the right professionals and at the right time.
  • We will provide and build on the HMSA’s website with view to it being a resource for GPs to, in which they can signpost their patients too,  whilst  remaining confident in the fact that the HMSA holds the NHS England accreditation, Information Standard.
  • We will build on a professional specific resources on the HMSA website, which will assist GPs by providing documents and importantly, video presentations of lectures at professional conferences associated with the HMSA. This will allow GPs to see the latest information on a variety of multi-systemic issues that affect their patients.
  • We will provide opportunities for HMSA Professional Masterclasses, training and mentoring under the HMSA Kent Model and peer support via the HMSA Professional Hypermobility Network.
  • Providing back up to GPs for their patients by providing a host of support mechanisms, which they can be confident in using to support the needs of  patients, such as; local support groups, self-management programmes, helpline and access to social media specific support, It will make a difference to those of you already diagnosed and those who remain undiagnosed today!

This will make a difference to all of you who are already diagnosed and to those people who have yet to be! 

Please give to the HMSA! Every penny does matter. 

Please donate using our Virgin Giving campaign page

http://uk.virginmoneygiving.com/fund/HMSAGPTools

Or via Just Text HMSA13 to 70070 followed by 5 or 10

Hypermobility Syndromes Association 10% off shop purchases extended to January 31st 2018

Posted By Donna Wicks, December 15, 2017

We have listened to our members, who have requested that we extend the 10% discount currently being offered in our shop.
The 10% also includes memberships!

You can give a membership as a gift for Christmas, or you can buy the popular ’25th Anniversary Celebration’ membership for 5 years and get your 10% discount on top! However, this membership will stop being available on the 31st December 2017.

Also due to popularity, we will continue to make our awareness packs available in the shop until at least the end of February. We know many of you have bought these to help support the ‘Giving GPs the Tools’ campaign. 

Start shopping by clicking here: http://www.hypermobilityshop.org/

*Excludes events, clothing, Really Useful Products and wheatbags, Type SALE-10% at checkout*

European Patient Forum – report on ‘ Added Value of Patient Organisations’

Posted By Donna Wicks, December 8, 2017
Report on the Added Value of Patient Organisations
European Patients Forum has publised a report to highlight the value of patient organisations as legitimate stakeholders in civil dialogue in health-related policies.The objective of the report is to emphasise the contribution of patient organisations in representing and voicing the situation of a specific population that would otherwise not be represented. The main activities of patient organisations are set out in four different areas: policy, capacity building
and education, peer support and research & development (both health and pharmaceutical).

What fantastic timing for the Hypermobility Syndromes Association? We have just launched our Giving GPs the Tools campaign, and are in the process of developing an eight week self-management programme for people with a hypermobility related disorder!

The report makes interesting reading.
Help us to help you by supporting our campaign. You can contribute by sharing our posts to raise awareness, tell us your story by emailing it to info@hypermobility.org or donate to the campaign
You can do this by Just Text to HMSA13 to 70070 followed by 5 or 10 or donate to the campaign page on http://bit.ly/2j3ouc7

Don’t forget there is 10% selected items in the HMSA shop hypermobilityshop.org Just use SALE-10% at the checkout.

 

Improving and Understanding Service User Involvement- Shaping Our Lives

Posted By Donna Wicks, December 7, 2017

This may be of interest to some of the HMSA members and social media users.

This report aims to improve understanding of good and bad experiences of service user involvement in the commissioning, design, delivery and evaluation of public sector services and the challenges faced by service users in negotiating their dual role of both being a service user representative and recipients of services. This report will be of interest to Disabled people who are service users and for people who design, manage and evaluate services in the public sector.
This was a user-led piece of research designed and carried out by Disabled researchers. It arose directly out of a Disabled person’s own concern and was undertaken by a Disabled People’s Organisation.
Improving Understanding of Service User Involvement and Identity

For more information on the report please use this link below. It is great to know that the HMSA is working along these guidelines.

:https://www.shapingourlives.org.uk/resources/our-resources/all-publications/improving-understanding-of-service-user-involvement-and-identity?utm_source=National+Voices+Members&utm_campaign=0d65b471b0-MU_130717&utm_medium=email&utm_term=0_00458e9137-0d65b471b0-108603413

You can donate via Just Text HMSA13 to 70070 followed by 5 or
10, depending on the amount you wish to donate.
Or you can donate directly on our campaign page onhttp://bit.ly/2j3ouc7

Don’t forget there is 10% selected items in the HMSA shop hypermobilityshop.org Just use SALE-10% at the checkout.

The Hypermobility Syndrome’s Association Helpline (an overview) by Helpline volunteer, Steph. and HMSA Professional Team:)

Posted By Donna Wicks, December 6, 2017

The Hypermobility Syndrome’s Association helpline is run by trained volunteers, all of whom suffer from a hypermobility syndrome themselves. The aim of the helpline is to provide support to those suffering from any of the hypermobility syndromes, whether that is, Hypermobility Spectrum Disorder (HSD), any of the Ehlers Danlos Syndromes, Marfan Syndrome, Osteogenesis Imperfecta, Pseudoxanthoma or Stickler Syndrome, all are welcome under our umbrella!


The volunteers on the helpline provide a listening ear to those who call us, we will provide positive support and advice when appropriate. We get a wide variety of callers, from those wanting to talk about specific aspects of their condition that are affecting them, general advice on well-being and help in finding specialists that may be able to help them with their condition. We sometimes get calls from people who suspect that they might have a hypermobility syndrome and want advise about what to do. However, a lot of the callers are looking for somebody to listen to them, to provide a listening ear and to provide a bit of comfort.

We also get calls from professionals, including GPs or primary physicians. These calls are usually about finding services or other professionals who may be able to assist their patients. These calls are easily dealt with due to knowledge of our helpline volunteers.

Some GPs ask us to provide literature to them, so they can share it with their patient/s. Others just want to talk to one of the HMSA Professional Team and use us as a sounding board, whilst they work through the complex issues that their patient may be experiencing. These calls are increasing all the time and we are very pleased to hear from any professional who is attempting to identify and assist a patient with a hypermobility syndrome. We hope that due to the ‘Giving GPs the Tools’ campaign, these types of calls will increase.

The HMSA Helpline, is here for our 3Ps (patients/service users, professionals and providers of services). The volunteers in the helpline team are very dedicated and caring people who happily give up a few hours a week or a month to support those who need our help.

If you think you have the skills to assist on the Helpline or want to help in another way then please do get in touch. We are always recruiting volunteers and it doesn’t matter how many hours you can give us, you will still be an important part of our team.

If you want to support us by donating to the HMSA ‘Giving GPs the Tools’ campaign, you can do so by
Just Text HMSA13 to 70070 followed by the amount you wish to donate either 5 or 10.
Or you can donate on the campaign Virgin Giving page http://bit.ly/2j3ouc7 It doesn’t matter if its a small amount because every penny does matter.

Visit hypermobilityshop.org for 10% off shop products, excludes clothing, Really Useful Products and wheatbags, Type SALE-10% at checkout


Disclaimer
The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.