At Muscular Dystrophy Support Centre (the operating name of the Charity, NMC Midlands Ltd) we take privacy very seriously and are committed to protecting your personal information. We aim to be clear about how we collect and use your data and to only use and collect information in a way that you would reasonably expect.

Introduction

This policy explains how we may collect and use the information you give us. We work with your personal information so we can develop a better understanding of you and then make better marketing and service decisions, fundraise more effectively, and be more efficient in our support for people with and affected by muscular dystrophy (MD) and other neuromuscular conditions.

We are a charity offering specialised physical therapies and support to people (18+) who live in the UK and have a progressive muscle wasting neuromuscular condition. To do that, we collect and use “service information” which includes information about your condition and therapy; opportunities for you to take part in events, peer conversations and virtual meetings, and information about the help and support available and how to make the best use of it. Occasionally, we might also invite you to take part in surveys to help us better understand the needs of our service users.

We also use and share marketing information and communications, which can include general communications about muscle-wasting conditions, service user peer networks that we facilitate, news about events that we are hosting for service users and carers, updates on fundraising campaigns, opportunities to fundraise, and other ways to get involved with the work of the Charity. If you would like us to send you such communications, please let us know by using the following “Opt-In” link or by emailing us at getintouch@mdsupportcentre.org.

Your Personal Data and How We Use It

The type and quantity of information we collect and how we use it depends on why you are providing it.

Service Users and Formally Identified Carers

We collect data from you in order to provide you with such services as physiotherapy, osteopathy, complementary therapies and any other support services. We will never share your personal information or medical records without your consent, except in the unlikely case of a medical emergency or incident. On occasion our therapists will share information about you with other healthcare professionals on your behalf and only with your knowledge and prior consent, such as sharing information about your physiotherapy plan with your Consultant or GP.

Information collected about your condition may sometimes be used for collective data analysis, for example in order to improve our knowledge or demonstrate the impact of our services, and findings may be shared or published. Data used in this way will always be anonymised and no individual will be identifiable from its presentation.

With regard specifically to personal healthcare related data and medical records the Charity adheres to ‘The Common Law Duty of Confidentiality’ and the NHS Caldicott Principles. Principles followed to ensure that information that can identify a patient is protected and only used when it is appropriate to do so.

You can find out more about the Caldicott Principles via www.gov.uk and search for – ‘Caldicott Review: Information Governance in the Health and Care System’

The Charity also complies with UK General Data Protection Regulation (UK GDPR) Article 9 – ‘Special Category Data’ in relationship to healthcare records. The handling and protection of such information comes under the category of more sensitive data.

Supporters

If you support us, for example you make a donation, volunteer, hold an event for us, register to fundraise, sign up for an event or buy something from us, we will usually collect:

  • Your name
  • Your contact details
  • Your debit/credit card or bank details if making a payment by card or by standing order/direct debit

In certain circumstances where it is appropriate, we may ask for:

  • Information relating to your health (for example if you are taking part in a high risk or sporting event).
  • Your date of birth (if it is relevant to taking part in a high risk or sporting event)
  • Your reason for supporting us. We will never make this question mandatory, and only want to know the answer if you are comfortable telling us.

We will use your data to:

  • Provide you with the services, products or information you asked for.
  • Administer your donation or support your fundraising, including processing gift aid where applicable.
  • Keep a record of your relationship with us.
  • Manage your marketing preferences.
  • Understand how we can improve our services, products or information.

Whatever your involvement or interest, we aim to be as tailored as we can in our communications to you. We also want to speak to you in the way you’d prefer – whether this be by email, on the phone or in writing. To help us do this, we will sometimes analyse things like what you are interested in and where you live to help us engage with you in a meaningful way. This is important because it means we will endeavour to only provide you with information based on what you have shared with us about your interests.

Volunteers

If you volunteer for us (for example by joining our Steering/ Focus Group or by organising fundraising events) we will record your details in order to contact you to and share information relevant to your chosen voluntary activity.

Some people choose to tell us about their experiences of living with a muscle-wasting condition to help raise awareness or funds. This may include sharing sensitive information related to their health and family life, in addition to biographical and contact information.

Only if we have the explicit and informed consent of the individuals will we make such information public at events, in materials promoting the work of the Charity, fundraising activities, or in documents such as our annual report.

Direct Marketing

With your consent, we will contact you with recent news and updates, to let you know about the progress we are making. Additionally, but only in keeping with your prior consent and related preferences, we may contact to ask for financial and non-financial support. We make it easy for you to tell us how you want us to communicate, in a way that suits you. We will always include information on how to unsubscribe or request no contact (Opt-Out) from us if you have previously Opted In. If you decide you don’t want to hear from us or no longer want to hear from us even though you did previously, that’s not a problem, please just get in touch to let us know and we will make sure your wishes are followed.


We do not and never have sold or shared personal details with third parties for the purposes of marketing. But, if you attend an event run in partnership with another named organisation, i.e. a skydive or a sporting event run by a third party, your details may need to be shared with the organisation involved in running that event. We will be clear what will happen to your data in this circumstance when you register for such an event.

Where We Collect Information (personal data) About You From

We collect information in the following ways:

WHEN YOU GIVE IT TO US – DIRECTLY

As a supporter you may give us your information to receive our publications or newsletter, sign up for one of our events, tell us your story, make a donation, purchase a product from us or communicate with us. We will give you the opportunity to Opt-In to receiving marketing and fundraising information from us.

Such information will also be offered if you register as a service user or formally identified carer and the same Opt-In policy will apply.

WHEN YOU GIVE IT TO US – INDIRECTLY

Your information may be shared with us by independent event organisers, for example, the Birmingham Half Marathon or fundraising sites such as Just Giving or Local Giving. These independent third parties will only do so when you have indicated that you wish to support the MD Support Centre, and with your consent. You should check their Privacy Policy when you provide your information to understand fully how they will process your data.

WHEN YOU GIVE PERMISSION TO OTHER ORGANISATIONS TO SHARE IT

We may combine information you give us with other information available from external sources, so that we can gain a better understanding of you, and improve our fundraising methods, products and services.

You may have given permission for other organisations to share your data with third parties, including charities. This could have been when you bought a product or service, registered for an online competition or signed up with a comparison site. Based on your settings, or the privacy policies for social media and messaging services like Facebook, Instagram, LinkedIn and Twitter, you might give us permission to access information from those accounts or services.

Information that is available publicly may include that found in places such as Companies House, the Charity Commission Register, and in published articles/newspapers.

WHEN WE COLLECT IT AS YOU USE OUR WEBSITES OR APPS

As with most websites, we use “cookies” to help us make our site faster and easier for you to use. Cookies help a website to remember you. They’re small text files that sites transfer to your computer, phone or tablet. So, for example, it might automatically fill your name and address in text fields. You can read more in our Cookie policy.

The device you use to visit our website may share with us information about what type of device it is, and what operating system it uses. Your device manufacturer or operating system will have more details about what information your device makes available to us.

If you do not wish to accept cookies on to your machine you can disable them by adjusting the settings on your browser. However, this may affect the functionality of the website.

How We Keep Your Data Safe And Who Has Access

To protect your data:

  • We ensure that there are appropriate technical controls in place to protect your personal details.
  • We undertake regular reviews of who has access to information that we hold to ensure that your information is only accessible by appropriately trained staff with a legitimate interest for access and those registered professionals / 3rd parties for whom you have provided explicit and informed consent.
  • Where we use software provided by external companies to store or process personal data on our behalf, we undertake checks on those companies before we work with them and put a contract in place that sets out our expectations and requirements. Some of these companies may run their operations from outside the UK, inside and outside of the European Economic Area (EEA), which might lead to your personal information being transferred, processed and stored in other countries. Although they may not be subject to same data protection laws as companies based in the UK, we will take steps to make sure they provide an adequate level of protection in accordance with UK data protection law. By submitting your personal information to us, you agree to this transfer, storing or processing at a location outside the UK.

We may need to disclose your details if legally required to the police, regulatory bodies or other legal advisors.

We will only ever share your data in other circumstances if we have your explicit and informed consent.

Keeping Your Information Up-To-Date

We do our best to keep your records up to date. However, we really appreciate it if you let us know if any of your contact details change.

Your Right To Know What We Know About You, Make Changes or Ask Us To Stop Using Your Data

You have a right to ask us to stop processing your personal data. If it’s not necessary for the purpose you provided it to us for (e.g. processing your donation or registering you for an event) we will do so.

Speak to us in person, contact us 02476 100770 or email getintouch@mdsupportcentre.org if you have any questions or concerns.

You have a right to ask for a copy of the information we hold about you. If you spot any mistakes, please let us know and we will correct them.

If you want to access your information, send a description of the information you want to see and proof of your identity by post to MD Support Centre, Unit 10 Westwood House, Westwood Business Park, Westwood Way, Coventry CV4 8HS. We do not accept these requests by email for security reasons.

We will acknowledge your requirement on receipt of the formal request and appropriate verification of identity, and will then provide this information within 30 days, free of charge, provided the request is not complex or numerous in content.

For further information regarding your rights, please see the Information Commissioner’s guidance. If you would like to make a complaint about how we process your personal data, please contact us on 02476 100770, by email at getintouch@mdsupportcentre.org or by post to MD Support Centre, Unit 10 Westwood House, Westwood Business Park, Westwood Way, Coventry CV4 8HS.

If you are not happy with how we deal with your complaint, you should contact the Information Commissioner’s Office. You are also entitled to make a complaint to the Information Commissioner’s Office without first referring your complaint to us.

Changes To This Policy

We may change this Privacy Policy from time to time. If we make any significant changes to the way we treat your personal information, we will make this clear on the MD Support Centre website or by contacting you directly.

If you have any questions or concerns about any aspect of this policy, you can contact us on 02476 100770 or email getintouch@mdsupportcentre.org 

Muscular Dystrophy Support Centre is a working name of NMC Midlands Ltd. Registered Charity No. 1148855 and a company limited by guarantee 08132198 in England

Policy date – february 2022