Taking action on safeguarding concerns
As a sibling of a disabled adult you might be worried about the quality of care or support your brother or sister is receiving. Your brother or sister might have directly told you something worrying, or you might have noticed changes in their mood or behaviour. Sometimes these concerns are very serious and you may think there is some level of abuse or neglect.
What is safeguarding?
“Safeguarding” is a term that is used to mean the protection of people who might have difficulty protecting themselves. This might be a person who needs care and support, as a result of a disability or long-standing illness. Safeguarding is about making sure that everyone can live their lives safely without the risk of abuse or neglect.
Abuse or neglect can happen anywhere, and by anyone. It might happen within the family home, at a day service, volunteer centre, workplace or residential home. For siblings, these are very tough issues to face. You might be living a long way from your brother or sister or may suspect that a family member is the one who might be responsible for causing harm. Whatever the situation, it is important that you speak up about your concerns.
What is abuse?
“Abuse” means to treat someone badly. Abuse is often intentional and for personal gain, however some abuse is unintentional. Different types of abuse and possible signs of abuse are described below in more detail.
Types of abuse
This list is not exhaustive – you may come across other types of mistreatment. It’s important to remember that several types of abuse can happen at once. The possible signs of abuse that are listed below are not necessarily hard evidence that abuse is happening, but they are an indication that further investigation needs to take place. If you have concerns – you must talk to someone about them.
Examples: hitting, kicking, smacking, slapping, hair-pulling, pushing, rough handling, scalding or burning, inappropriate use of restraint, misuse of medication (e.g. over-sedation), genital mutilation, forced feeding or deliberate withholding of food, forced confinement or isolation, making someone deliberately physically uncomfortable (e.g. removing jumper and opening a window to make them cold).
Possible signs of physical abuse: unexplained injuries; injuries that are inconsistent with an account of what happened; injuries that are inconsistent with the person’s lifestyle; injuries not followed up/ignored; frequent changes of GP; changes in weight or appearance; insomnia; changes in behaviour such as becoming withdrawn, anxious or angry; changes in behaviour around a particular person or in particular situations.
Examples: rape, attempted rape, sexual assault, indecent exposure, sexual photography, inappropriate looking or touching, forcing someone to look at pornography or witness sexual acts, sexual teasing, harassment or innuendo, pressuring someone to consent to sexual acts, or carrying out sexual acts when someone cannot consent
Possible signs of sexual abuse: bruising; signs of sexually transmitted infections such as pain, itching, bleeding or discharge; unusual difficulty walking or sitting; new incontinence not related to any medical diagnosis; reluctance or fear of receiving help with personal care; unusual changes in sexual behaviour or attitude; unusual changes in sexually explicit language; insomnia; changes in behaviour such as becoming withdrawn, anxious or angry; changes in behaviour around a particular person or in particular situations.
Example: removing walking stick or frame, removing communication aids, intentionally leaving someone unattended when they need assistance, control, threats, belittling, intimidation, humiliation, over-protection, coercion, harassment, cyber bullying, restricting personal choice or opinion, refusing to respect privacy, deprivation of contact/refusing visitors, verbal abuse, or the use of infantilising language
Possible signs of emotional abuse: low self-esteem and self-depreciating language; tearfulness; changes in weight or appearance; insomnia; changes in behaviour such as becoming withdrawn, anxious or angry; changes in behaviour around a particular person or in particular situations.
Financial and material abuse
Examples: not allowing someone access to their own money or possessions, using their money or possessions for the wrong purposes (e.g. unauthorised use of a car; moving into someone’s home without agreement), pressuring someone into spending their money in a certain way (e.g. take out a loan, sign a will, hand over inheritance), fraud, scamming (e.g. telephone, online, on the doorstep), rogue traders.
Possible signs of financial and material abuse: signs of unpaid bills, credit card debt, insufficient food in the house, repeated and unnecessary repairs on a house; gradually withdrawing or becoming more isolated from friends/family; personal possessions missing; unexplained lack of money; unexplained withdrawals from bank account; person managing the affairs fails to provide receipts or evidence of spending and/or is evasive when discussing finances.
Examples: not providing or allowing access to food, heating, clothing, appropriate housing, personal care, medical care, social life and stimulating activity. Not appropriately maintaining any of these needs.
Possible signs of neglect: changes in weight; untreated injuries or health conditions; inadequate clothing (for example, no coat in winter); pressure sores; poorly maintained environment; poor personal hygiene.
This is a lack of self-care so extreme that it affects personal health and safety. Examples of self-neglect include hoarding, not maintaining living space, ignoring health needs such as having appropriate food and heating, not attending to personal hygiene, not accessing appropriate medical care when needed.
Possible signs of self-neglect: living in dirty conditions, neglecting house hold maintenance, very poor personal hygiene, lack of appropriate food, heating and clothing, hoarding.
Hoarding can also be a sign of a mental health problem. For more information about hoarding, visit Mind.org.uk.
Please note: Self-neglect is specifically recognised as a type of abuse in England and Scotland. In Wales and Northern Ireland, it is likely that self-neglect would be reviewed on a case-by-case basis.
Examples: exploitation, human trafficking, forced labour, debt bondage – being coerced into debt then ‘working’ to repay that when they will never realistically be able to, forced domestic servitude.
Possible signs of modern slavery: living in overcrowded and unkempt conditions; isolation and lack of contact with community; appearing malnourished or withdrawn; unkempt clothing and poor personal hygiene; always accompanied by another person they seem fearful of; lack of personal documents or identification; fear of authorities and unwillingness to disclose information.
The Modern Slavery Helpline offer advice and support on modern slavery 24 hours a day, 7 days a week on 08000 121 700.
This is any type of abuse (e.g. emotional, financial, physical or other types listed above) which happens within an intimate personal relationship or family setting. Domestic abuse often includes control, coercion and threatening behaviour.
Examples of control, coercion and threatening behaviour: isolating a person from their wider friends/family; monitoring their time; monitoring their phone/online communications; dictating everyday movements e.g. where a person can go/who they can see/what they can wear; name-calling/putting a person down; gaslighting (repeatedly undermining or questioning a person’s reality); any kind of threat or intimidation either physically or verbally.
Forced marriage is a type of domestic abuse where a person is pressured, coerced or forced to marry, or they don’t have the capacity to consent to marry. Forced marriage is illegal in the UK. The Forced Marriage Unit has a helpline (020 7008 0151) to provide advice and support for relatives of people who are victims of forced marriages
Female Genital Mutilation (FGM) is a type of domestic abuse where a female’s genitals are forcibly cut or removed for non-medical reasons. FGM may be carried out when the person is a new born baby, a child or teenager, before marriage, or during pregnancy. FGM is illegal in the UK. It is also illegal to take someone from the UK to another country, to perform FGM. Click here for more information and advice on FGM.
This is any type of abuse (e.g. emotional, financial, physical or other types listed above) that is carried out on the basis or perceived basis of a particular characteristic, such as age, gender, disability, religion, sexual orientation, race.
Examples of discriminatory abuse: refusing to dress someone in preferred religious clothing because it takes longer; excluding a person from an activity on the basis of their gender; not providing a reasonable adjustment to a disabled person accessing a service; derogatory remarks about a person’s choice of food that represents their culture; not offering someone a service on the assumption that they won’t need or want it due to their age.
This can be any type of abuse (e.g. emotional, financial, physical or other types listed above) and repeated poor practice that happens within an organisation, however it typically refers to denying an individual their choice and autonomy. This might be a specific care setting, such as a hospital or care home, but it can also refer to a person’s own home where care is provided by a team.
Examples: inappropriate use of power, inappropriate restrictions or confinements, lack of choice in environmental aspects (e.g. food, heating, lighting, decoration), lack of personal possessions, lack of choice in routine (e.g. having no flexibility in eating/sleeping schedule).
Possible signs of institutional abuse: overcrowding; unhygienic environment; discouraging visits from friends/family; being forced to go to bed at a certain time simply because it meets the needs of the staff/environment; not being offered a choice of hot drink or being told that hot drinks are only available at set times.
Other terms to be aware of
‘Hate crime’ is a term used to describe any incident or crime that is motivated by hostility or prejudice towards a person because of a particular characteristic (such as disability, race, religions, sexual orientation, transgender identity). Hate crime is a criminal offence in the UK and can be reported to the police. Find out more about hate crime here.
‘Mate crime’ is when someone befriends a person in order to exploit or abuse them. Mate crime can involve many of the types of abuse listed above (e.g. financial/material, physical, emotional, sexual). Mate crime may start online or over social media, or in a person’s own home.
‘Cuckooing’ is a term often related to mate crime, and refers to when someone takes over or stays in a person’s home, despite the person not wanting this. Find out more about mate crime here.
‘Online harm’ is when someone uses the internet (e.g. apps, social media, websites, messages) to cause physical or psychological harm to a person. This may include hate or mate crime, or cyberbullying (intimidating, threatening or offensive messages).
It is important to be aware of radicalisation. This is the process of a person adopting extreme views (e.g. religious, political or social) which can result in them carrying out acts of terrorism. A person may be targeted by extremist groups, and groomed and recruited over a period of time. The government has released guidance (‘Prevent Duty’) for authorities in England, Wales and Scotland on preventing radicalisation and countering terrorism. There is no equivalent guidance in Northern Ireland.
What should I do if I think my disabled brother or sister is being abused?
If your brother or sister is in immediate danger report this to the police straight away.
If there is no immediate danger we recommend that you take the following actions:
- If your brother or sister is able to keep their own records, talk to them about how best to keep track of what is happening and how to store these notes or photos privately.
- Keep notes about the date and time of any incidents, who was involved and where it happened. Take photos if relevant and make copies of any useful documents such as care plans.
- Keep a record too of your brother or sister’s moods and behaviour – they may show specific reactions to a member of staff for example, or there may be a change in behaviour over a period of time that may have worried you.
- This may help you build a case if you need to and also firm up your evidence if you are worried about whether your concerns are real or not.
Report to the local authority
In some cases – for example, if your concern is about a particular member of staff within a care home setting or a hospital – you (or your brother/sister) may feel able to discuss the concerns with someone you both trust within the management team in the first instance, as they may take the appropriate safeguarding action.
If your brother or sister has a key professional such as a learning disability nurse, you can raise the concerns this way too. It is the responsibility of all staff working with disabled people to recognise concerns and report poor practice or safeguarding issues.
However, if this isn’t relevant for your situation, you should report your concerns to the local authority in which your brother or sister lives.
Who to contact:
- In England and Wales, contact the local authority and ask to speak with the Adult Safeguarding Team.
- In Northern Ireland, contact the Adult Protection Gateway Service based in your local Health and Social Care Trust.
- In Scotland, contact the Adult Protection or Care team in your local council.
Making a formal complaint
- If the response you receive after raising your concern is unsatisfactory or if you feel it hasn’t been taken seriously, you can raise it as a formal complaint. Each local authority and service has a formal complaints procedure which they should have in writing or on their website which you can follow.
- Read our guide on making a complaint What to do if your disabled brother or sister doesn’t receive the care that they should
Taking legal action
- In most cases issues can be resolved through taking issues directly to service providers within the local authority or getting their support to change a situation for your brother or sister. However, there are some situations where the abuse or neglect may be so serious that it has caused serious injury, trauma or in rare cases, the death of a disabled person. In these situations more legal expertise needs to be sought.
- You can contact a solicitor for more advice. There are some lawyers who specialise in human rights law or community care law for example who can guide you through the process.
- Remember there may be time restrictions in taking a case to court, so if a case is serious you may want to get legal advice as soon as possible.
Does your disabled brother or sister use direct payments?
Some disabled people use direct payments to manage their care. This means they have agreed with their local authority to have a personal budget which they manage, paying for their care directly. People using this system often recruit and employ their own carers (rather than using an agency or having self-employed carers). As the employer, they have employment responsibilities for the carers that they take on (e.g. payroll, pensions, sick pay etc). This approach has many benefits and it can be challenging if things go wrong with a carer that your disabled brother or sister has employed, such as concerns about abuse.
Getting support when you have concerns about a carer you employ through direct payments
“My disabled sister employs a personal assistant (PA) herself using direct payments, and I support her with this. As we directly employ the PA, we don’t have an agency or organisation to turn to. I’m worried about some of the PA’s behaviour. I’m concerned that if I raise the issue with the PA, or sack them, they could fight back alleging unfair dismissal. We’re slowly building evidence, but it’s really hard leaving my sister in the sole care of someone that I’ve got growing doubts about.” – Adult sibling
This is not an easy situation to be in, particularly if you’re concerned that your sister is potentially at risk of abuse. You just want your sister to live a safe and happy life and that’s not a lot to ask. Being a sibling can be complex and challenging – you’re not alone.
You’re right to keep building evidence:
- If your sister is able to keep her own records, talk to her about how best to keep track of what is happening and how to store these notes or photos privately.
- Keep notes about the date and time of any incidents, who was involved and where it happened. Take photos if relevant and make copies of any useful documents such as care plans.
You and your sister may have some difficult decision making. For example, whether to deal with a situation informally with a chat over a cuppa or whether to give a formal written warning. Does the situation warrant suspending the person while there is an investigation into what might have happened?
It may also help to seek further support and advice:
- Skills for Care – employing personal assistants and sorting out problems
- Disability Rights UK – personal budgets helpline (includes advice on direct payments and employing PAs)
- You may be able to access other HR support and advice through your local authority
This is a stressful situation for you as a sibling, and it can really help to meet others who just ‘get’ what sibling life is like. Find out more about our sibling support groups and join here. Chat with other siblings online on our private facebook group here.
Getting further information and advice
- In England, Wales and Northern Ireland, a Safeguarding Adults Board (SAB) is a group of organisations that work together to prevent abuse and to improve safeguarding procedures. In Scotland, these are called Adult Protection Committees (APC). You can contact them for advice on safeguarding (but not to directly report a concern – see above for how to report this). Find your local SAB or APC here.
- Hourglass is a UK charity specifically focusing on abuse and neglect of older people
- Inquest investigates the deaths of vulnerable people in state care (in England and Wales), including those of people with a learning disability or autism in NHS run institutions
- The Challenging Behaviour Foundation supports families of people with severe learning disabilities who display challenging behaviour and can advise on issues about inappropriate restraint or restrictive practices
Helping your brother or sister
If your brother or sister has experienced neglect or abuse, they may need some expert help and support to overcome the trauma and stress they have experienced. Seeing your brother or sister receive this support may help you too.
- Your brother or sister’s GP may be able to refer them for counselling or they may be able to self-refer depending on what is available in their area
- If your brother or sister has a learning disability or mental health team they may be able to suggest a service they could be referred to or if necessary, bring in some expert therapeutic support from outside the area
- The charity Respond supports adults with learning disabilities and/or autism who have experienced abuse or trauma
“My brother was abused by a member of staff in the residential service he lives in. Luckily he is verbal and was able to report the abuse and it was taken very seriously by the management of the home. The member of staff was removed and appropriate action was taken. But what was hard for me was the aftermath, my brother was just so angry and upset. He has a learning disability and just couldn’t understand why this had happened to him. Working with the staff where he lives, we managed to find some counselling from a service in another county. He also went on a body awareness course for people with learning disabilities. This really helped to improve his confidence and helped him slowly to move on from what had happened.” – Karen, adult sibling
Support for you
As a sibling you may be a key support for your brother or sister through this very difficult time and it is important that you look after yourself too:
If you need urgent support:
- To talk about anything that is troubling you, call Samaritans on 116 123 any time of day or night or email email@example.com
- Prefer to text? Use the ‘Give us a shout’ text service. Text ‘Shout’ to 85258 to talk about your feelings, at any time of day or night
- CALM (for men). Phone line 0800 58 58 58, open 5pm – midnight. Webchat service here
Sibs would like to thank all the adult siblings on our reader panel who generously shared their time and experiences to help develop this page. Interested in joining our reader panel? Click here to find out more.