The Hypermobility Syndromes Association will change to operate as a Charitable Incorporated Organisation (CIO) on the 1st July 2020

What is a CIO, and why are we changing to become one?

A Charitable Incorporated Organisation is the most appropriate structure for the HMSA – both now, and for the foreseeable future. One key difference is that it has the legal capacity to enter into contracts and employ staff in its own name. Under our current structure the trustees (as individuals) are legally responsible for employees and contracts. Becoming a CIO will allow us to do these things as a charity, improving both governance and administration.

The essentials:

The main changes to the charity details will be the charity registration number and the bank account.

The details for the new organisation are:

The Hypermobility Syndromes Association

49 Greek Street

London

W1D 4EG

Helpline: 03330116388

Registered charity: 1186735

(Note that the helpline and postal address are unchanged.

Who are the trustees?

The current board are trustees of the CIO, and Keith Diaper has also joined as a trustee of the new CIO.

Does this mean the charity’s governing document is changing?

A new charity constitution has been created as part of the process, based on the template provided by the charity commission and having taken appropriate advice.  For anyone who is interested, the new constitution can be seen here. When the new CIO goes live on the 1st July, it will be available via the ‘about us’ section of our website.

The CIO aims and objectives are listed below – the wording has changed but the overall message remains the same:

For the public benefit to preserve and protect good health among, and relieve the needs of, people affected by Hypermobility Syndromes, in particular by:

  1. Providing validation, education, rehabilitation and positive self-management advice for people with hypermobility related disorders and their entire support network, including their families, teachers, friends and colleagues. Encouraging a culture of support while raising awareness, knowledge and self-determination.
  2. Improving the quality of life, and enabling effective self-management for affected individuals through a variety of resources, including (but not limited to): self-management programs, support groups, social media, publications, helpline and support from our expert patient volunteers.
  3. Working with and educating the relevant medical, social and health professionals in developing awareness and understanding of the biopsychosocial impact of hypermobility related disorders for individuals and their entire support network.
  4. Supporting and encouraging individuals in their pursuit of diagnosis and treatment, via signposting to appropriate services where necessary.
  5. Providing an environment which enables people affected by a hypermobility syndrome to volunteer, furthering the charity’s aims whilst developing their own workplace skills and confidence.
  6. Maintaining the Information Standard, as was accredited by NHS England, so as to ensure the high standard of all HMSA publications in whichever format deemed suitable.
  7. Working with other organisations to undertake and promote research into hypermobility related disorders, the useful results of which will be published for the public benefit. To seek to be the patient partner and to disseminate research, surveys and investigations whilst maintaining our high standard of information.
  8. Collaborating with other organisations on policies, strategies and projects, which are synergistic with the CIO’s own strategy and values.

 

What will happen to existing projects?

All the HMSA’s current work (membership, website, social medial, local groups, enews, journals, the helpline, seminars and workshops, educational resources, and online support groups) will be continued (hopefully seamlessly) by the new organisation.

Projects like the GP campaign will be continued too. It has been on hold while the board has been working on various organisational issues (like converting the charity to a CIO), but the funds raised specifically for the GP campaign will be kept as restricted funds that will be used for the GP campaign by the new CIO. 

What will happen to membership?

Membership will continue unchanged as the CIO takes on all the work of the current charity. However, if you are a current member but do not want your membership to continue with the new CIO, simply email [email protected] or write to us at 49 Greek Street, London, W1D 4EG stating that you do not wish your membership to be transferred to the CIO.

How will it affect direct debits?

For direct debits set up through our website, these will be transferred to the new organisation (unless you contact us asking us to cancel it, or you cancel it yourself).

How will it affect standing orders?

Unfortunately we have been legally required to create a new bank account, and standing orders cannot be moved over. The charity cannot make any changes to standing orders. We hope to close the old bank account in September, and when we do, all standing orders will stop. Standing orders have been a significant portion of our income for many years, so if you have previously had a standing order we would really appreciate it if you would go onto our website and set up a direct debit instead and then cancel your standing order (There are separate pages for membership donations and general donations – make sure you use the right page!)

If anyone has questions about anything relating to the new CIO, you can contact Hannah Ensor (Chair of the board of trustees) on [email protected]