Policy Statement

Myotubular Trust recognises that the duty of care to safeguard the welfare of children and vulnerable adults is very important. We are committed to ensuring that safeguarding practice is of the very best practice, has the welfare of children at its core, and reflects statutory responsibilities.

This policy has been developed recognising that the welfare and interests of children are paramount in all circumstances. It aims to ensure that regardless of age, gender, religion or beliefs, ethnicity, disability, sexual orientation or socioeconomic background, all children…

– have a positive experience with any interaction with the Myotubular Trust and our staff in a safe environment

– are protected from abuse whilst participating in any activity provided by the Myotubular Trust

Myotubular Trust acknowledges that disabled children can be particularly vulnerable to abuse and we accept the responsibility to take reasonable and appropriate steps to ensure their welfare.

Given the nature of our work it is highly unlikely that any member of staff or trustee would have unsupervised contact with a child or vulnerable person, but we recognise our responsibility for promoting best practice with regards to safeguarding.

Staff and trustees will ensure they are accompanied by a parent or responsible adult when they come into contact with children or other vulnerable people in the course of their duties.

Staff and trustees who come into regular contact with children or other vulnerable people which is more than incidental or fleeting will have a Disclosure and Barring Service (DBS) check completed for their work on behalf of the Trust.


The policy will be reviewed a year after development, and then every three years, or in the following circumstances:

  • changes in legislation and/or government guidance
  • as required by a Local Safeguarding Children Board
  • as a result of any other significant change or event, including a change in personnel (as we are currently a very small team)



1.   Introduction

These guidelines apply to staff employed by Myotubular Trust and work directly – on a face to face basis – with children and families and adults with myotubular and centronuclear myopathy. It also applies to Trustees, and those who volunteer with event where the Myotubular Trust is providing an activity for children and families.


While the guidance is written in reference to children, Myotubular Trust are using the same guidance to cover vulnerable adults.

It is important to remember that children with disabilities are two to three times more likely to suffer physical, sexual or emotional abuse than their able-bodied peers. They are also more likely to experience neglect and more prone to be targeted by abusers including members of their own family.


This vulnerability is caused by the fact that they

  1. are dependent on a greater number of adults and professionals to meet their everyday needs
  2. are more likely to live away from home and or receive care in a range of locations and situations – a lack of continuity of care can mean that behaviour changes may go unnoticed
  3. may have communication or learning difficulties which may make disclosure more difficult to identify


People with myotubular or centronuclear myopathy, because of their physical weakness, are unlikely to be able to communicate clearly, or resist physical / sexual abuse. Lack of integration and disability awareness can lead to feelings of low self-esteem and self-image that make the willingness to accept abuse more likely. Adults with disabilities are also more likely to experience abuse for similar reasons to the above.


Myotubular Trust recognises that we are a small organisation, and therefore any safeguarding concerns must be raised with all colleagues (at time of writing, 3) and reported to the Trustees.


2.   What to do if you are worried a child / vulnerable adult is being abused


Discuss your concerns


Discuss your concerns and any differences of opinion with both colleagues. If you still have concerns, you could discuss your concerns with senior colleagues or the named person responsible for Safeguarding in other agencies – this may be an important way of you developing an understanding of the reasons for your concerns about the child’s welfare.


You must, at this stage, inform the Trustees of the Myotubular Trust and keep a record of your concerns and the initial discussion / action you take, even if you go no further.


Report your concerns (if, after discussion, you are still concerned) either –

  • Through the child protection procedures of the institution / place where the child/adult has been seen (e.g. clinic, hospital, school). If you pass information about child/adult through the child protection procedures of another authority, and are not satisfied with the actions taken, you should pass the information directly to appropriate social service department.


  • Or directly to the appropriate social service department (the department in which the child /adult lives) or the police.


Keep a detailed written record of your concerns and the actions you take / have taken.

If you make your referral by telephone, confirm it in writing within 48 hours. Social services should acknowledge your written referral within one working day of receiving it. If you have not heard back within 3 working days, contact social services again. 

Discuss the case with your colleagues and together provide a written report to the Trustees of the Myotubular Trust as soon as is practicable.

Agree to participate in any case conference or other meeting with social services or relevant professionals about the care / situation.

Remember the safety of the child is paramount.


3.    Things to consider and discuss


  • Remember that an allegation of child abuse or neglect may lead to a criminal investigation so don’t do anything that may jeopardise a police investigation, such as asking a child leading questions or attempting to investigate the allegations of abuse.


  • When referring a child to social services, you should consider and include any information you have on the child’s developmental needs and their parents’/carers’ ability to respond to these needs within the context of their wider family and environment. Similarly, when contributing to an assessment or providing services, you should consider what contribution you are able to make in each of these three areas.  Specialist assessments, in particular, are likely to provide information in a specific dimension, such as health, education or family functioning.


  • Record full information about the child, at first point of contact, including name(s), address(es), gender, date of birth, name(s) of person(s) with parental responsibility (for consent purposes) and primary carer(s), if different, and keep this information up to date. In schools, this information will be part of the pupil’s record.


  • Record all concerns, discussions about the child, decisions made, and the reasons for those decisions. The child’s records should include an up-to-date chronology, and details of the lead worker in the relevant agency – for example, a social worker, GP, health visitor or teacher.


  • When you make your referral, agree with the recipient of the referral what the child and parents will be told, by whom and when.


4.    What if


What to do if a child or vulnerable adult discloses or begins to disclose abuse to you? What if a family member tells you of their suspicions of abuse?


Children who disclose


Do not question the child just listen to the story and report it. Do not blame the abuser, as this is often someone the child loves. Tell the child that you cannot keep the information a secret, you will need to tell another professional but you will not talk directly to the person who they are accusing and you will keep them safe.

Listen to what they want to tell you but do not ask them questions (except about when the incidents took place see above). If you question them, you may be accused of asking leading questions and if there is a court case the evidence will not be valid. Evidence is always taken in carefully controlled situations with specialist police and social workers. Refer the case to social services immediately.


Adults who disclose


Adults may disclose past incidents that happened to them when they were children or more recent situations of abuse as adults.  These may be solely in the past or still taking place.

Ask them if they want you to make a referral on their behalf or go with them to the police to make a disclosure. If an adult gives you information and asks you to keep it confidential you will need to make a judgement. Abuse is a crime and you need to consider whether or not to report it to the police.  You need to respect the adult’s wishes and encourage them to speak to the police, a social worker and or counsellor themselves. You should offer to arrange this for them.  Most police forces have specific vulnerable adult protection officers who can sensitively deal with the case.


Family members / other individuals who provide information


Tell them that you cannot keep the information a secret. You should also try to get them to talk to social services about their concerns, but do not leave it to them to make the referral. Even if they say they will make the referral, you must make the referral as well explaining the circumstances to social services. You have a professional duty to provide information. While you may be able to keep their identity a secret in the first instance, they need to be aware that depending on what happens they may be required to give evidence at a later date.


What to do if you are worried about potential abuse, abusers or abusive situations


Potential abusive situations you have concerns about should be treated in the same way as cases where there is more ‘evidence of abuse’ and a referral about your concerns should be made to social services.  Child protection is about keeping the child / vulnerable adult safe and not about producing evidence in a court of law.


Who to Contact in an Emergency

  • Local Social Services Department will have a 24 hour number and an out of hours Duty Social Work Team. (These are now listed and available on the Council’s web-sites.)
  • Police have Family and Adult Protection Teams and work closely with their local Social Services




Definitions of Abuse

“Children have the right to be protected from all forms of violence (physical and mental). They must be kept safe from harm and they must be given proper care by those looking after them.”

(United Nations Convention on the Rights of the Child, Article 19)


It is important to note that abusive situations do not have to involve active participation. An individual who is aware of an abusive situation and does nothing is effectively ‘sanctioning’ the activity. By doing nothing they are contributing to the abuse by knowingly allowing it to take place.


There are 4 types of abuse:

Neglect:  the persistent or severe neglect of a child which results in serious impairment of the child’s health or development, including non-organic failure to thrive.


Exposure to danger, Failure to attend to physical or developmental needs, Failure to ensure treatment or medical checks, Failure to ensure access to appropriate equipment and adaptations, Failure to meet children’s basic emotional needs, including disability issues


Physical abuse: a physical injury to a child where there is a definite knowledge, or a reasonable suspicion, that the injury was inflicted or knowingly not prevented.


Bullying, hitting, kicking, pulling hair, burning, poisoning, pinching, drowning, suffocation, etc, Failure, knowingly, to prevent injury, fabricated illness (a parent presenting their child to the doctor with an illness or symptoms which are fictitious or that they have induced in the child), Failure to address the physical needs (disability) of a child   


Sexual abuse: the involvement of dependent, developmentally immature children and adolescents in sexual activities they do not truly comprehend, to which they are unable to give informed consent, that violate the social taboos of family life or which have been knowingly not prevented by a carer.


Engaging a child in sexual activity, making a child watch sexual activity, making a child watch pornographic material, Inappropriate touching of a child, making suggestive sexual comments to a child


Emotional abuse: the persistent or severe emotional ill-treatment of a child which has a severe adverse effect on the behaviour and emotional development of the child.


Rejection, threats, cultural abuse, deliberate humiliation, blackmailing, bullying, religious discrimination, extreme inconsistency, racial abuse, denial of disability, gross failure to discuss the nature of the disability with the child (e.g. a parent telling a wheelchair using child that he has no disability).