Latest News

Taking Action 2018 – 2022 Supporting people and families with hypermobility syndromes

Posted By Donna Wicks, May 23, 2018

TAKING ACTION TO IMPROVE THE LIVES OF PEOPLE LIVING WITH A HYPERMOBILITY SYNDROME

 

                                                                 Statement Donna Wicks, CEO   

As a sufferer of Ehlers-Danlos syndrome, I was medically retired from my much loved career as a Registered Mental Health Nurse, specialising in rehabilitation, in 2008. Although Ehlers-Danlos syndrome was the main reason for my retirement, it was not the only long term condition I had, but it certainly had the most impact on me at that time. Having your career taken away at the age of 38 years leaves to much heartache and certainly a loss of identity, which I struggled with leading up to and beyond my retirement. I was very lucky, in that after attending my first HMSA Residential Weekend in 2008, with my mother, I was offered the opportunity to start volunteering in the HMSA. This led to me meeting an incredible bunch of people who were also involved in the charity and together we worked hard to start the development of the HMSA, from a UK based support group for people with what was called then hypermobility syndrome or joint hypermobility syndrome. After a relatively short period of time, I was given a paid role, which included acting as the HMSA’s Senior Medical Liaison Officer an in 2013, I was honoured to become the CEO.

Over the last 9-10 years, I have developed the charity to provide national and international support for people suffering with hypermobility syndromes, focussing on growing the volunteer network, and 5 years ago, as requested by members and others, we opened our doors to people in the wider hypermobility related syndrome community, which included Ehlers-Danlos syndromes (all types), Osteogenesis Imperfecta, Marfan syndrome, PXE and Stickler syndrome. I am pleased to say that I have transformed the HMSA to provide support for all people, regardless of type and nature of their hypermobility condition.

This support would not be possible without the extensive volunteer network, which as sufferers, like myself, are the engine of the charity working tirelessly with good will and passion to drive the charity forward. I believe that without the passion and drive behind my volunteers and my staff, the HMSA would not be in the position it is in today. I have needed every one of them to work with me and to effect change in the charity. As both individuals and a team, they are amazing and incredibly supportive. The team is reinforced by a growing number of valued and respected medical professionals who work with me on a variety of projects. The group of professionals and I have been able to ensure that we provide positive support to both patients and the professionals that are treating patients.

What drives me forward is to ensure that the HMSA continues to support patients to come to terms with their hypermobility related disorder, but I am determined that we expand this support, ensuring that it is more tailored to the individual, so that quality of life can be accomplished.

 

                                   Run by people affected by a hypermobility syndrome,

                                    for people with one of the hypermobility syndromes

 

HMSA–WHO ARE WE?

Established over 25 year ago, the HMSA are  small UK charity with international punch,  having evolved to be the only charity offering advice, support and providing reliable information for people and their carers who have a hypermobility syndrome, which includes hypermobility spectrum disorder (HSD), joint hypermobility syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Stickler syndrome and Osteogenesis Imperfecta.

We offer a whole host of differing opportunities for people and their carers to access the information or support they need at the right time, through its trusted website and publications, well attended social media groups, supportive local groups, acclaimed helpline, and its respected education programmes.

We have a number of distinct and unique characteristics, which supports how we operate to provide our services, including:-

  • Offering advice and information accredited through NHS England ‘Information Standard Scheme’ .We have strived to obtain this award so people can have greater comfort that the advice that we provide has been rigorously assessed to ensure that it is clear, accurate, balanced, evidence-based, relevant and up-to-date.
  • Run mostly by volunteers, with over 50 regular volunteers, whom are all affected by one of the hypermobility syndromes. With an understanding of how hypermobility syndromes affect physical, mental and social health, which drives our volunteers to want to help improve the lives of other people who are suffering from this syndrome.
  • Many of the HMSA’s staff are also medical professionals. The medical professionals are in a unique position where they are able to offer support to both people with one of the hypermobility syndromes and the professionals treating and supporting them.

Whilst we have made considerable achievements, the HMSA are taking active steps towards working proactively in collaboration with a number of key partners to transform the access to care for people with one of the hypermobility conditions, with a particular focus on developing a care pathway and self-management programmes.

 

 

WHAT ARE HYPERMOBILITY SYNDROMES? 

 

Hypermobility syndromes or hypermobility related disorders

Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement. For a small percentage of the population, instead of being advantageous, hypermobility may be associated with joint and ligament injuries, pain, fatigue and other symptoms. Hypermobility can also be a sign of a more serious underlying condition, which are often passed down through the generations. These conditions are known as Heritable Disorders of Connective Tissue (HDCT) and  are often complex and multi-systemic  in nature.

When our group of medical advisors use the phrase ‘hypermobility syndromes’ they are referring to the group of HDCTs in which symptomatic-hypermobility is now recognised as a common feature. The most common of these is joint hypermobility syndrome, which used to be thought by many experts as the same as hypermobile Ehlers-Danlos syndrome (hEDS). We now know that there is a spectrum of hypermobility disorders, which can vary in severity of presentation. Hypermobility spectrum disorders (HSD) can be experienced very differently, even within the same family,

HDCTs also include other rarer variants of Ehlers-Danlos syndrome (such as the classical (cEDS) and vascular (vEDS) types), Marfan syndrome, and to differing degrees, Osteogenesis Imperfecta and Stickler syndrome. It is important to understand that each HDCT has its own differing symptoms and complications, as well as also sharing a broader commonality. For instance Marfan syndrome and vascular Ehlers-Danlos syndrome, may have potentially life threatening complications and therefore have very different needs; classical Ehlers-Danlos syndrome has potentially more severe and differing symptoms from the hypermobile EDS; and in Osteogenesis Imperfecta a person is more likely to suffer fractures either spontaneously or after minimal trauma.

 

 

Hypermobility Syndromes – What Are The Effects?

In HDCTs the body’s connective tissue proteins that give the body its intrinsic toughness are affected. A person’s joints are lax because they have looser and more stretchy connective tissues, particularly their ligaments and tendons (soft tissues). Hypermobile people can easily injure soft tissues around joints because their joints can twist or over extend easily, and may partially dislocate (or ‘sublux’), or in some cases fully dislocate joints. Whilst the majority of hypermobile people recover from an injury (though this may be slower than normal), others only partially recover, or continue to repeatedly injure various parts of their body.

Structural defects in the body’s connective tissue proteins, allow micro-traumas, which are often not visible on tests such as MRIs, to occur repeatedly in the same area of connective tissue without completely healing. Injuries associated with the hypermobility syndromes may cause immediate ‘acute’ pain and can also lead to longer-term ‘persistent pain’, which can be severe and widespread.

The skin and internal organs may also be affected, as connective tissue is found in all areas of the body. For some, this can cause additional problems, for example; involving the gastrointestinal system, the autonomic nervous system and problems with bladder function.

The severity of symptoms, the joints that are affected, and the level of pain and fatigue experienced by those with a hypermobility syndrome can vary greatly from day to day. These symptoms can interfere with daily activities of living, schooling or work. The associated pain can become widespread and persistent and might initially be diagnosed as or confused with, another condition called fibromyalgia.

Severe fatigue that persists, despite rest or a proper night’s sleep, is another common symptom. In addition, early muscle fatigue may be caused by muscles having to work hard to stabilise joints. Fatigue in the hypermobility syndromes can also easily be confused with a condition called Chronic Fatigue syndrome, or Myalgic Encephalopathy (ME). It is important that the right diagnosis is made, as the approach to treatment such as physiotherapy, occupational therapy, and pain management may be different.

 

WHY ARE WE TAKING ACTION?

To support patients with one of the hypermobility conditions

Patients and their families with a hypermobility condition tell us that they face numerous challenges, which when combined have a significant impact on every aspect of their lives.

 

To assist with the education of professionals who care for those with the disorders.

The HMSA offers assistance, membership and education programmes to professionals of all disciplines who work with people with one of the hypermobility syndromes. For health and medical professionals only a small amount of medical training covers the hypermobility syndromes and not in to any great degree.

Little or no training is given to social and educational professionals who may be dealing with young families with multi-generational presentation of a hypermobility syndrome.

 

 

To respond to the changing national healthcare policies

With significant cuts to national healthcare budgets and policies to support the delivery of healthcare, this will impact further on the treatments and services patients with hypermobility conditions, can access, which are already limited.

Whilst this is a challenge, this may also provide opportunities for charities, such as the HMSA, to work more proactively with local Clinical Commissioning Groups and collaboratively, with other similar minded organisations, to deliver targeted services to patients, educate health professionals delivering services to meet patient needs, whilst reducing patient referrals.

The key national health care policies and acts, which are relevant to the HMSA include:-

  1. Joint Strategic Needs Assessment, an amendment to the Health and Social Care Act 2012 demands that local government and public health address the JSNA. (The JSNA is a statutory document that describes the health and social care needs of the population, identifies gaps and unmet needs, and makes evidence-based recommendations to health and social care commissioners.)
  2. Department of Health and Social Care single departmental plan updated Jan 2018
  3. Equality Act 2010
  4. Long Term Conditions 2010-2015
  5. The power of information: giving people control of the health and care information they need 2012
  6. Health and Social Care Act 2012
  7. NHS Choice Framework 2016

             

 

 

 

What have we achieved? – a quick look

 

Where do we want to go next?

To help us drive our ‘Taking Action’ plan forward over the next five years, this will be supported by our overall purpose and a number of key goals, which reflect the key challenges that people and their families, with a hypermobility syndrome face on a daily basis, along with new opportunities that can be seized.

To support the delivery of our overall purpose and key goals, we have developed the ‘3P’s (‘Patients, Professionals and Providers approach’), to delivery. We have learnt via experience, that professionals and providers in health and social care also need assistance in learning, and an understanding of how to best manage the people in their care with these conditions. Unfortunately little is taught to professionals during their initial training about these conditions. Therefore we will develop and deliver quality initiatives, which are strongly underpinned by patient needs, and maximise the opportunity to build capacity for learning by professionals and providers, who can support patients with hypermobility conditions.

 

TAKING ACTION – PLAN 2018 – 2022

By taking into consideration the key challenges that patients, their families and professionals face on a daily basis, we have developed a programme of interventions, which will be delivered during 2018 – 2022, subject to funding.

 

 

 

In addition, other area’s of our work include the following examples of goals and actions.

 

How we will monitor our action

 

We recognise the importance of monitoring our progress in delivering the identified interventions within our action plan, and appropriate monitoring targets and approaches to demonstrate the value of the actions, will be developed and reported on an annual basis.

This will include a survey of HMSA Member’s on an annual basis to ensure we are meeting the needs of the community and to identify any gaps in information or services that may become apparent.

For more information on how we will monitor our work please email info@hypermobility.org

 


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.