Skip to content
Make a donation
Make a donation

Network Guidelines

Network Guidelines

SMA UK and our social networks do not provide medical advice, this should always come from your individual clinical team. Although there may be members of this group who are health professionals, they are not involved with SMA UK in this capacity. Any medically related suggestions shared on this group should not be taken as medical advice. Please always consult with a qualified healthcare provider if you have any questions or concerns about your health or your child’s health.

Anyone joining any of our networks is asked to follow these:

Equality and Diversity: treat all people equally and with respect, irrespective of age, gender reassignment, disability, ethnicity, marriage or civil partnership, pregnancy or maternity, religion or belief, sex and sexual orientation.

Different experiences: what works for one may not be right for another; everyone’s experiences are different and valuable.

Privacy and Confidentiality: the SMA UK Networks are a brilliant way to ask other people questions, or to share thoughts and experiences about anything at all! It’s of course fine to take away conversations or ideas from the Networks to help you, or to share them with your family and friends, but please be mindful that this is a private and confidential space for people to share their experiences. If you are talking about what you have heard, unless you have permission, please don’t do so in a way that will identify others. Similarly, please don’t copy or forward any part of a conversation unless you have had permission from the person who shared it first.

Obtain Consent: never act on behalf of a member of the network unless they have clearly given their consent for you to do so

Negative statements: if you have negative things to say about any individuals or organisations, please don’t air these on the network. You may wish to privately contact a network moderator or member of the Support and Outreach Team if you wish to discuss them. Please also read the next guidelines:

Safeguarding and Whistleblowing: Network members are asked to follow the links and read more about what to look out for in every day life and the responsibilities we all have. Our network moderators are very aware of these responsibilities when it comes to what is discussed on the networks and will follow up appropriately on any concerns they have.

Talking about SMA UK: You are always very welcome to tell others about services, networks and fundraising activities but please get in touch if you would like someone to talk ‘officially’ about what we do via office@smauk.org.uk

Everyone has a fundamental right to live a life that is free from harm, abuse and neglect. To safeguard is to take all reasonable measures to ensure this right is achieved for adults and children and that risk of harm to anyone’s welfare is minimised. Safeguarding is everyone’s responsibility.

You may never come across a safeguarding issue. Serious incidents don’t occur often, but if you’re ever aware that someone is in immediate danger – for example there’s a medical emergency, a risk of injury or a crime is in progress, act straightaway – call 999 for emergency services.

If you ever hear or see anything that’s not an emergency but causes you any concern at all about any child or adult’s welfare or safety, the best way you can give them support is by:

  • listening and observing
  • not asking questions or investigating
  • remembering that safeguarding takes priority over confidentiality
  • letting them know that you will pass the information on to the relevant person, with their permission if possible

If your concerns are for someone you have come across through your volunteering and networking role with SMA UK:

Whistleblowing is the reporting of suspected wrongdoing.

It’s what we ask you to do if you’re concerned that anyone in a caring or support role, that you come across through your volunteering and networking role with SMA UK: such as a staff member, volunteer or personal assistant is in some way abusing their position.

Please:

  • listen and observe
  • don’t ask questions or investigate
  • pass on the information at the earliest opportunity, and complete and submit our: SMA UK Whistleblowing Concern Report Form – The Support Team will then do all the follow-up necessary.