We are constantly updating this information, so if you think we should add something that isn’t here, please contact us and we will be happy to talk to you about adding it.
Acronyms • Advice for Medical Issues • Advocacy • Article 2 Inquest • ATU • CCG • Clinician • Coroner/Coroner’s Court • CQC • Duty of Candour • Domestic Homicide • Family Liaison Officer (FLO) • Feelings • Grief • Grief Counselling • Health and Social Care Commissioners • Healthwatch • HSIB • Inquests • Investigations (Independent) • Investigations (Root Cause Analysis) • Investigations (Serious Incident Investigation) • Language • Learning Disability • LeDeR Investigations • Local Authority • Maternity Deaths • Mental Health • Mental Health Homicide • Mental Health Investigations • PHSO • PMLD • PTSD • Safeguarding • Serious Incidents • Social Services • Suicide • Suicide Bereavement • Support during Investigations • Supported Living • Useful Organisations
Acronyms
You’ll meet a lot of these as they are very widely used within the NHS, the police and legal services. An acronym is an abbreviated form which uses the letters of a word or title, instead of using the whole title or word. For example, LA for Local Authority, DNR for Do not resuscitate of CCG for Clinical Commissioning Group. If someone uses an acronym with you and you don’t understand it, do ask what it means and don’t be embarrassed to ask. Sometimes clinicians can be so used to using them, they forget that not everyone is from their world or uses these and it’s good to remind them.
Advice for Medical Issues
Here are some bullet points around basic advice if you are concerned about a serious medical issue affecting a member of your family:
- Ask if there is a family liaison officer at the NHS Trust. They may be able to support and advise you (their role can be different in different Trusts).
- See if there is an independent advocacy organization, support group or charity which can advise and support you in any meetings
- If there’s going to be an investigation – think beforehand about what you want to get out of the investigation.
- Think about the questions you might want answers to and write them down.
- Keep a record of all conversations and get responses in writing from the Trust or organization where your loved one was treated or cared for.
- Find out what level of investigation will they be doing (and if they’ll be one)
- Make sure you check about the scope of the investigation, which means: what will they include in the investigation and what will be excluded.
- You may need support to stand your ground on what you want to be included.
- Check whether they will be carrying out an internal investigation or whether it will include other organisations.
Advocacy
If you are dealing with any type of investigation, it can be really useful to have the support of an advocacy organisation. These are groups, sometimes charities, which offer to advise you on your rights and help you to think about what you want to say and the questions you need to ask. Sometimes they will offer to come with you to meetings and speak with you to the investigators. Your NHS Trust should have a list of advocacy organisations in your area which they can give to you.
Article 2 Inquest
There is a type of inquest which is called an Article 2 inquest. Not everyone who has an inquest has one of these and they are not automatic.
The easiest way to explain what they are is to explain that they are named after Article 2 of the European Convention on Human Rights (ECHR) which concerns “right to life”. This covers the obligation not to deprive a person of life except in certain, limited circumstances, to protect life where appropriate and thirdly, the duty to investigate suspicious deaths.
There is usually an Article 2 inquest if the death was caused by failures that were not only systematic but sufficiently serious to breach the obligations of the state to maintain safe structures and rules to protect life. The other important thing about an Article 2 inquest is that it’s about an authority (a local authority of an NHS Trust for example) being aware of the failings but failing to act upon them. If this is found, then the authority is not just “negligent”, but the death is subject to an Article 2 inquest.
ATU
An ATU is the abbreviation for an Assessment and Treatment Unit. Assessment and treatment units are designed to be short-term secure placements for people with learning disabilities to receive treatment before moving back into the community. However, they are controversial as sometimes people can live in them for years and as they can sometimes be far from the person’s family, there have been several high-profile campaigns about releasing the person and placing them in an alternative setting, closer to home.
CCG
This is the common abbreviation for Clinical Commissioning Group. Every part of England has them now. They are the groups which decide what services are needed in their areas and where they should commission those services from. This will cover all sorts of services, from GPs to supported living homes, mental health support, community services, hospital care, rehabilitation and more.
If you’re unhappy with some aspect of care, your local CCG will probably be involved in your complaint at some point. They also can commission investigations.
Clinician
This is a word which is widely used throughout the NHS, but not used much outside of it. Basically, a clinician is a doctor, nurse practitioner or healthcare professional who treats patients. It covers more than just doctors and usually means any professional who is responsible for giving treatment or consultation.
Coroner/Coroner’s Court
If you have an inquest, it will be at your local coroner’s court. The inquest will be run by the coroner for your area or county. The role of the coroner is to hear all the evidence presented at the inquest by the witnesses and any experts who have been asked to give evidence.
At the end of the inquest, the coroner will decide what the causes and circumstances were around the death. A coroner is not a judge, but they must have some type of legal background. Some have medical experience as well.
CQC
The CQC or Care Quality Commission is the independent regulator of healthcare and adult social care services in England. They make sure the care provided by hospitals, dentists, ambulances, care homes and home-care agencies meet government standards of quality and safety.
There are limits to their powers. Although they can draw attention to possible problems with a healthcare provider and recommend changes, they can’t force them to make those changes.
The CQC regularly inspects all registered health and adult social care services across England, even if standards are being met. Sometimes, they make unannounced inspections in response to concerns which patients or families have raised with them. There are four ratings they can give following an inspection: outstanding, good, requires improvement and inadequate. They have the powers to make enforcement orders. This means they can close care homes or other services they regulate. It also means that the CQC is able to bring prosecutions against both care providers and individuals, should particular regulations be breached.
If you want to check the CQC rating for a service in your area, you can do so by going to the CQC website.
Duty of Candour
In November 2014, Duty of Candour was introduced to cover all NHS bodies. From 2015, this also covered any care providers registered with the CQC. It means that all clinicians have an ethical duty to be open and honest when something goes wrong, to apologize and to put things right if possible.
The Duty of Candour is about ensuring honesty and openness with patients and their families, both in person and in writing. It is a statutory duty, so must be observed, though it covers organisations rather than individuals. For more information, the MDU website offers clear explanations: Duty of candour at a glance
Domestic Homicide
One way to decide if a death should attract a Domestic Homicide Review (section 9(3)) is to use the Domestic Violence, Crime and Victims Act 2004 (the 2004 Act). The Act states:
(1) In this section “domestic homicide review” means a review of the circumstances in which the death of a person aged 16 or over has, or appears to have, resulted from violence, abuse or neglect by
(a) a person to whom he was related or with whom he was or had been in an intimate personal relationship, or
(b) a member of the same household as himself,
held with a view to identifying the lessons to be learnt from the death.
Depending on how it is defined, and according to official statistics, there may be about 170 domestic homicides every year in England and Wales. It is a gendered crime, with far more women being killed by men than men being killed by women. Other sources (for example, the Femicide Census) may declare different figures. There is also the concept of slow femicide (Walklate et al 2020) which considers those deaths that may somehow be traced back to domestic abuse. Domestic homicide may bring particular aspects different to other homicides. It may often include overkill (repetitive stabbing even after the body is dead) and it is a breach of trust.
Family Liaison Officer (FLO)
Since 1999, the police have employed Family Liaison Officers (FLO) and their primary role is in investigations. They gather evidence and information from the family as part of the investigation. They also provide support to the family and act as a liaison between the family and the investigating officers. Family Liaison Officers need to act in a sensitive and compassionate manner at all times and a major part of their job is to pass on new information to the family in a timely manner.
In recent years, some NHS Trusts have begun to include either an FLO post or an FLO department. NHS Family Liaison Officers have much the same role as a police FLO. But the actual terms of what they can offer families very much depends on the Trust. Some NHS FLOs are in charge of the investigation, whereas at other Trusts their role is just to support the family and keep them updated with any new information.
Feelings after a death or when a loved one is seriously harmed
How you might be feeling:
- Shocked, numb, afraid, unable to sleep, extremely stressed- having flashbacks
- Unable to switch off- going over things constantly in your head
- Sweating, feeling faint
- Afraid for other family members
- Trying to support children/ other relatives at a time when you need support yourself
- Angry
- Confused by the information you are having to take on board
- Struggling to cope with information about what happened
- Blaming yourself for what happened, when it’s not your fault
- Being unable to talk to other family members about it
- Feeling isolated, as others may not understand what you are going through
- Struggling to know what to say to family or neighbours
There is no right way to feel or to cope with this.
Grief
There is no “normal” or “abnormal” grief. Everyone’s grief journey is different and there is no right or wrong way to grieve or feel – just the way that you are grieving.
There has been a lot written about grief and some of it is helpful, though you may feel that some of it doesn’t apply to you. Grief can leave you feeling very isolated and we’d recommend speaking to one of the grief organisations for support and advice (see list of useful organisations) if you are feeling as if you can’t cope.
Grief Counselling
Not everyone who is bereaved will feel the need for counselling, though many people find it very helpful. If you do, and you feel you would benefit from it because of your bereavement, you should see a professional counsellor who specializes in grief counselling. Many grief counsellors only do this type of counselling. This means that if you go to one, it’s far more likely that they will understand your needs and your problems.
If the family member who has died had a disability, you may like to think about having counselling with organisations who specialise in this.
Health and Social Care Commissioners
Health and Social Care Commisioners are the people responsible for identifying the needs and priority outcomes for individuals and communities.
Social Care Commissioners will be employed by the Local Authority, whilst Health Commissioners work either within the CCG (Clinical Commissioning Group) or in NHS England. Often, if they are employed by the Local Authority, they’ll be working closely with the CCG as well. In some areas, there is joint commissioning.
The Commissioners work with a range of providers to help put together a package which gives the best value for money but also meets the eligible needs of the person, or meets the needs of the local community.
Healthwatch
Healthwatch is the independent champion for people who use health and social care services. Their role is to encourage health and social care services to involve people in the decision making that affects them and to ensure that those services hear people’s voices.
There is a local Healthwatch in every area of England. Your local Healthwatch cannot take up individual cases, but any incident you report may raise issues they want to investigate – they have power of entry into residential care establishments, for example.
HSIB (Health Safety Investigation Branch)
The Healthcare Safety Investigation Branch was set up by NHS England to conduct independent investigations regarding patient safety concerns in NHS-funded care across England.
They undertake patient safety investigations through two programmes – national investigations and maternity investigations.
They have the power to investigate individual maternity deaths and neonatal deaths, on behalf of families. They follow strict criteria to decide which deaths they can investigate.
In their national programme, the investigations usually address ongoing and possibly long-term problems around patient safety. They work with families and patients as well as staff. At the end of their investigation, they will publish a report which will shine a spotlight on identifying issues and to identify the learning from the deaths so changes can be made to services.
Inquests
A Coroner’s Court is the place where investigations are held into the causes of a sudden and unexpected death. A coroner is a special judge who investigates unnatural or violent deaths, where the cause of death is unknown, or because the death took place in prison, police custody or another type of state detention, such as a mental health hospital. The inquest may investigate fatal cases of medical negligence, fatal accidents or possible suicide.
The coroner’s first step is to decide if an inquest is necessary. The purpose of an inquest is to find out who died, how they died and when and where they died. An inquest is a public court, so any member of the public can attend to hear the investigation. This means you can bring family and other supporters or advocates with you. In special circumstances, the inquest can also be held privately. But that is usually only done when there are national security issues.
If criminal proceedings are happening as well, the inquest will be adjourned to allow those to take place. There may be a pre-inquest review in complex cases.
Most inquests take place within a year, but there may be delays in complex cases. In that case, the Coroner will have to report to the Chief Coroner to explain why there is a delay. The coroner can also write a report to prevent further deaths happening from the causes identified. Sometimes there is a jury (though this isn’t commonplace).
Some websites will tell you that the family doesn’t need legal representation as the inquest isn’t about apportioning blame and that its purpose is only to decide on how the person died. However, if you know that the other side is going to have a legal team present, it’s a good idea for the family to have legal representation, too. This is more likely where a public body, such as NHS Trust, will be involved.
The Law Society website will give information on solicitors who are experts in inquest processes.
The inquest may only be the first type of investigation and there could be others afterwards that will use findings from the inquest.
For more information for families, follow this link to a clear guide on inquests: Guide to Coroner Services
Investigations (Independent)
An independent investigation is one which is run by an organisation not directly linked to the healthcare provider who was responsible for the care of the person who died.
These are usually commissioned by either NHS England or sometimes by the local CCG. The reasons you might have an independent investigation are:
- because the death falls under the NHS Serious Incident Framework
- to increase public confidence in the service going forward
- to provide an assurance framework for Trusts providing mental health services and
- to demonstrate that they are learning from action plans.
An independent investigation can also be commissioned to see if a homicide (particularly mental health homicide) could have been prevented or if the healthcare provider needs to learn lessons from it for the future.
In the case of people who have died in the care of a residential or supported living home, if there is an Article 2 inquest, an independent investigation will usually be commissioned by the local CCG. Sometimes, investigations can be multi-agency reviews with Safeguarding Adults Boards and NHS Services, CQC and police and any other appropriate services.
Investigations (Root Cause Analysis)
NHS investigations use Root Cause Analysis (or RCA) in their serious incident investigations. This is standard procedure in the airline industry and other high-risk industries.
It is a method of structured risk identification and risk management after serious incidents. The aim is to learn from incidents to prevent them from happening again. It is not just one tool, but several, to help work out what went wrong. It can be very valuable if used well.
Critics say that one of the problems with this approach is that it assumes that there is one or only a limited number of causes for the incident, when there may be complex reasons for serious incidents.
Issues have been identified with the way staff are trained and failures to learn, despite the RCA. Poor quality of investigations and the process being hindered by the strict timelines for investigations have all been contributory factors in poor quality Root Cause Analysis. Staff need to be experts in using this approach if the RCA is to be effective.
Information from the learning is not always shared with those involved. The focus tends to be on learning locally. Failure to disseminate information from RCAs more widely with other Trusts can also hinder improvements in safety.
Sometimes it is also not clear who is responsible for fixing problems identified.
Families and patients are important in this process, as they may bring vital evidence to the RCA process to make the learning as useful and effective as possible.
Investigations (Serious Incident Investigation)
Serious Incident investigations take place where a person may have been harmed or their death was caused by care failures in NHS Trusts both in hospitals and in community-based services. There are different levels of investigation and different types of investigation, depending on the circumstances.
In acute hospital trusts, if there is a serious incident, it will be investigated by the Mortality and Morbidity Committee, which is led by clinicians. It is good practice to have experts outside that hospital involved to review the actions and decisions that doctors and other clinical staff have taken. You may wish to get legal advice about whether there has been medical negligence. AvMA (Action Against Medical Accidents) offer families advocacy, support and guidance, run campaigns and conferences to raise awareness of medical safety issues and also run a free helpline.
When there is a serious incident in mental health units, a decision can be taken by senior management that an internal investigation may be sufficient, depending on the circumstances. If there is a suicide or mental health homicide, there will be an automatic independent review.
Families may wish to seek legal or advocacy support advice early on if they are not satisfied with the level of investigation. Trusts have to adhere to the Serious Incident Framework, which sets out the criteria or calling a Serious Incident Investigation. The aims are to learn from these incidents and prevent serious harm.
If there has been a death of a mother around the time of giving birth or a baby dies, there is a separate investigation process (see Maternity Deaths).
Language (Translation)
If English is not your first language, you can ask for a translator to be present at all your meetings with the healthcare provider, the police or any other organisation. The majority of organisations will have access to a translation service which will provide a translator for meetings if necessary, or they may even have their own in-house translators who can sit in on meetings. If you think it would be a good idea to have one at your meetings, always let the organisation know as far as you can in advance.
Learning Disability
A learning disability (or LD for short) affects the way a person learns new things throughout their lifetime. A learning disability affects the way a person understands information and how they communicate. This means they can have difficulty:
- understanding new or complex information
- learning new skills
- coping independently
(Source: NHS England)
People with learning disabilities may also have other conditions as well. Disabilities including Autism, Cerebral Palsy, ADHD, Downs Syndrome and many, many more. Learning disabilities usually affect learning. Motor skills may also be affected.
Because the term covers such a wide range of disabilities, each person with a learning disability is a unique individual. Some will be more independent than others, but everyone with LD wants to live the best, happiest and most fulfilled life they can with the right support. There are many organisations in the UK which support people with LD and their families to help them achieve this. Please see the list of useful organisations.
LeDeR Investigations
LeDeR stands for Learning Disabilities Mortality Review. A review is a type of investigation following a death.
Since 2015, if someone above the age of four with a learning disability dies, their death should automatically be reported to their local area review team. A LeDeR review will be carried out by someone at local level who has received training in reviews and also has a clinical or social work background. There are criteria that determine the level of investigation required. The review looks at the person’s life, their treatment and the circumstances around their death. They then report to the local CCG about anything that could have been done better or might have prevented the death. They can also make recommendations about anything they think might improve services for similar people in the area.
The reviewer can look at GP records, social care records and hospital records (if needed) and also speak to the family of the person who has died in order to get a better idea of their life and their health. The family are encouraged to provide a pen portrait of what the individual was like as a person and to share information they might have. They can also raise any concerns they have or any questions which they feel are unanswered.
Having a LeDeR investigation doesn’t mean you can’t have any other types of investigation.
If the local area review decides there are issues that require deeper investigation, it may be referred for an independent multi-agency review panel. Every year, there is an annual report that identifies key themes for learning and improving practice.
Local Authority
Local councils are the most common form of Local Authority, but this term covers all local government. The Local Authority is responsible for a range of services in your area including planning applications, environment, trading standards, parking permits etc.
They are also responsible for adult and children’s social services. This means that they support family members who have additional needs beyond what health, education and community services cover. They have a duty to safeguard children and vulnerable adults. In some cases, they will be funding the placement of vulnerable adults, for example in supported living homes.
Maternity Deaths
The death of a baby or a mother around the time of birth is one of the most distressing situations a family can face. The death of a mother in late pregnancy or childbirth is still relatively rare: in 2015 to 2017, 209 women died during or up to six weeks after pregnancy from causes associated with their pregnancy, among 2,280,451 women giving birth in the UK. 9.2 women per 100,000 died during pregnancy or up to six weeks after childbirth or the end of pregnancy. This means that families can feel very isolated in their grief, as very few people know what it is like to experience this loss.
The death of a mother is investigated by HSIB while pregnant or within 42 days of the end of pregnancy. They look at direct deaths during labour and indirect deaths that result from disease processes caused by the pregnancy. All these deaths are investigated individually. Information about HSIB specifically for families can be found here: The HSIB Investigation – Family Information
The situation for investigating baby deaths is more complex, as it depends on when the baby died and the circumstances. For example, not all deaths of babies are investigated. For example, if the baby is born with congenital anomalies, there is no investigation.
HSIB have strict criteria to include or exclude certain baby deaths from their investigations. If a baby’s death doesn’t meet the criteria, the death is investigated by the local hospital.
The link that tells you what they will and will not investigate is here: HSIB – What we investigate
Please see our Useful Organisations section for Baby Loss charities.
Mental Health
We all have times when we experience poor mental health. Stressful and emotional experiences can cause you to experience mental health problems you may not have had before, or they may increase problems you were already experiencing.
If you feel that you are having mental health problems of any kind, you should begin by speaking to someone who can offer you useful guidance and advice. There are some excellent mental health charities who offer peer group support and several have helplines. Have a look at the list of mental health charities on the Useful Organisations page.
It can also really help to talk to your GP as they can let you know what possible treatments are available for you. They will be used to talking about this and they won’t be shocked or judge you. Mental health problems, particularly after a traumatic incident, are very common, so you are not alone.
Mental Health Homicide
When someone is killed by a person with a mental health condition who was being cared for by the NHS it is called a “mental health-related homicide”. The person who has done the killing is referred to here as the alleged perpetrator.
Following a mental health-related homicide, it is necessary to find out as much as possible about how the alleged perpetrator was cared for and treated to try to prevent similar incidents happening again. Sometimes more than one investigation is necessary to fully understand what has happened and what improvements might be helpful. This is separate from the criminal proceedings.
If it is your family member who has been killed by mental health-related homicide, you will almost certainly experience reactions to this traumatic and life-changing event. It can be difficult to come to terms with what has happened and we would definitely recommend that you receive support and if possible, advocacy from a specialist charity (see our List of Useful Organisations).
Mental Health Investigations
Initially, the Mental Health NHS Provider that primarily provided care for the alleged perpetrator will investigate the care and treatment of the alleged perpetrator. ‘Provider’ is the name given to the organisation which runs the facility, hospital, clinic or treatment centre providing services.
This is an “internal investigation” which commences within days of the incident. In some cases, it may be necessary to undertake an additional “independent investigation” which may be commissioned by NHS England and which usually takes place after any criminal proceedings are complete.
NHS investigations are conducted for the purposes of learning to prevent a recurrence – they are not inquiries into how a person died, as this is a matter for Coroners. Neither are they conducted to hold any individual or organisation to account. Other processes exist for that purpose including criminal or civil proceedings, disciplinary procedures, employment law and systems of service and professional regulation, such as those overseen by the Care Quality Commission and the Nursing and Midwifery Council, the Health and Care Professions Council, and the General Medical Council.
Management of all health-related incidents, including homicides, should be in line with the Serious Incident Framework and the Duty of Candour. Duty of Candour is a statutory duty to be open and honest with patients (or ‘service users’), or their families, when something goes wrong that appears to have caused, or could lead in the future, to significant harm.
PHSO
PHSO stands for the Parliamentary and Health Service Ombudsman. For many people who are not happy with the investigation into a death in healthcare, or who feel they need to have a wider and more comprehensive investigation, the PHSO are the body they contact.
The PHSO will investigate complaints that have not been successfully resolved with the NHS in England, or by UK government departments or any other public organisations. The service is free. There is no guarantee that their final findings will support the family’s viewpoint. In fact, their report may do the opposite, but many families turn to the PHSO when they feel other options have not achieved what they want. The PHSO are notorious for taking quite a long time over their reports, but they are very thorough so worth considering.
PMLD
Mencap define PMLD in the following way: “People with a profound and multiple learning disability (PMLD), who will need more care and support with areas such as mobility, personal care and communication.”
A person with PMLD may need a high level of support to have an independent life. Someone with PMLD may also have problems with sight, hearing and other disabilities, like epilepsy. But this is not true in all cases, and the degree in which PMLD affects each person varies enormously. Many people with PMLD are also wheelchair users.
By using assistive technology, people with PMLD are better able now to communicate their needs and wishes and with the right level of support, can lead longer, fulfilling and independent lives.
PTSD
PTSD is the acronym for Post-Traumatic Stress Disorder. People often associate this type of mental health problem with soldiers, police or the fire service and see it as only for people who have been through extremely traumatic events.
In fact, there are many forms of PTSD and many forms of traumatic events. It’s not uncommon for bereaved family members to suffer from PTSD, particularly if their loved one died suddenly or in a situation where the death was completely unexpected. The symptoms vary tremendously between people and often there is a delay before the symptoms start to appear.
If you think you may have PTSD following a death, you should start by speaking to your GP, who can advise you on the range of treatments available. PTSD is treatable. Even if you don’t recover completely, successful treatment can help you to live with the condition and manage it. There are several good charities who you might like to talk to if you, or someone you know, has PTSD. Please see our List of Useful Organisations.
Safeguarding
Safeguarding is the term used to describe the process of protecting vulnerable adults and children from abuse.
Social Services have a legal duty to act to safeguard individuals who are being abused. Each local authority has a Local Children’s Safeguarding Board (LCSB). These boards will each have an independent chair. Usually, the Boards are multi-agency and may include representatives from the police and other agencies. The role of the LSCB is to coordinate what everyone does on the LCSB to safeguard and promote the welfare of children in their area. They also work to ensure that everyone works effectively to protect the welfare of children in their area. They publish the policies and procedure to safeguard children in their local area. Each LCSB creates its own policies and procedures, so they may vary slightly from area to area.
Similarly, there is an adult equivalent in every area: the Safeguarding Adults Board (SAB). They have to work to ensure that local safeguarding arrangements are in place as defined by the Care Act 2014 and other statutory guidance. They also have a responsibility to make sure that vulnerable adults are protected, by working collaboratively with other agencies, such as the police, probation, drug and alcohol services, housing etc. Similarly, they have to work to take action to prevent abuse occurring and to ensure that investigations are carried out in a timely manner.
The Care Act 2014 states that Safeguarding Adult Boards must arrange a Safeguarding Adult Review (SAR) when an adult in its area dies as a result of abuse or neglect, whether known or suspected, and there is concern that partner agencies could have worked together more effectively to protect the adult. The local authority Social Services website gives contact details for their local Adult and Children’s Safeguarding Boards and information on how you can report concerns.
Serious Incidents
Serious Incidents include acts or omissions in care that result in:
- unexpected or avoidable death
- unexpected or avoidable injury resulting in serious harm – including those where the injury required treatment to prevent death or serious harm
- abuse
- Never Events (i.e. Serious Incidents that are wholly preventable because guidance or safety recommendations that provide strong systemic protective barriers are available at a national level and should have been implemented)
- incidents that prevent (or threaten to prevent) an organisation’s ability to continue to deliver an acceptable quality of healthcare services, and
- incidents that cause widespread public concern resulting in a loss of confidence in healthcare services.
The needs of those affected should be the primary concern of those involved in the response to and the investigation of serious incidents.
Social Services
Each Local Authority has a statutory duty to provide social care services to its residents.
There are some services that they have to provide – such as services to protect vulnerable children and adults. But there are some services that they have the discretion to provide or not. Typical services provided include commissioning and provision of support services to elderly or disabled people or people with mental health needs. They may provide residential care, or supported living services. They may support activities of daily living, such as shopping, cleaning, personal care such as bathing etc. They may also help with transport costs and provision of day services to name but a few services.
They have to act lawfully and legislation such as the Care Act 2014 set out the guidance that local authorities have to follow. Local Authorities work to eligibility criteria. These are the rules they use in their local area to decide who can receive their local services. They are only obliged to provide for eligible needs, but the discretionary services can vary from one area to another.
It does tend to mean that there are variations between local authorities about what services and support people can receive, depending on where they live, because some services are discretionary, or the Government guidance is interpreted differently.
Children are protected by a wide range of legislation, which the Local Authority Children’s Social Care services must follow to ensure that children’s well-being is protected. Children’s social care services include Children’s Safeguarding Services, provision of support for disabled and vulnerable children, children’s centres, fostering services etc. Like adult services, there can be variations in what each local authority provides. But they must follow the guidance from National Government for services that they must provide.
Social Care services can be challenged if they do not follow the guidance, using the complaints system initially, through to judicial review if the complaints process does not resolve concerns.
Suicide
Suicide means to end your life intentionally. You may feel alone, but in fact, you are not alone in thinking of suicide. It is estimated that 1 in 4 young people experience thoughts of suicide at some point in their lives.
Experiencing thoughts of suicide can be frightening. These thoughts can seemingly come from nowhere or begin as fleeting thoughts of wanting to disappear or escape. If they are not addressed, they may progress into feelings of hopelessness and worthlessness and planning or taking steps to end your life.
Anyone can experience thoughts of suicide and everyone is different. What makes suicide feel like an option to one person might be experienced very differently by someone else. And that’s okay. The important thing to remember is that suicide is both predictable and preventable.
If you are experiencing thoughts of suicide, it is important to know that there is help available. It can be really hard to know who to turn to and it can take a huge amount of courage to talk about the thoughts you are having about ending your life. Take some time to think about who you might want to tell; maybe someone you trust, or you feel would understand you. You don’t have to carry these feelings on your own.
There are lots of organisations that run helplines where trained staff will listen to you and provide the support and help you need. You can call The Samaritans or PAPYRUS Prevention of Young Suicide, or one of a number of suicide prevention charities. The important thing is to seek help.
If you suspect that someone you know is thinking of suicide, it is really important that you ask them. The way to do this is to ask a direct question: “Are thinking about suicide?”. Too often, people will ask someone an oblique question when what is needed is a clear and direct question. If they answer that they are, then you can ask if this has progressed to planning suicide and take steps to ensure they are safe. The important thing here is to give them permission to admit they are thinking of suicide, which is the first stage of seeking help and support.
Our advice to healthcare professionals is to always take very seriously the concerns of parents or close relatives when providing care and support to those who are experiencing suicidal thoughts. Our experience is that parents and close relatives often feel they’re not listened to and are not seen as part of the support mechanism that can support someone through a crisis and into recovery. It is crucial that parents and close relatives are encouraged to engage in providing care and support to someone who is vulnerable and suicidal.
Suicide Bereavement
Losing a parent, child or sibling, or even a friend to suicide can be the most traumatic event you ever experience. The loss of a life to suicide is an unimaginable event and coming to terms with the loss might take considerably longer than you expect. It is a life-changing event because those who have been affected by such an event, especially children, are themselves at risk and will need considerable support during the aftermath of a suicide.
Those who have been touched by suicide in this way will need themselves to be supported, dealing with the initial period of loss, through the coronial process (which itself can seem very daunting), and through any investigative process that may be necessary. Organisations like Survivors of Bereavement by Suicide, Compassionate Friends and Winston’s Wish, a charity for bereaved children, can be especially helpful.
Making Families Count is firmly of the view that families must be engaged in the care and support of those who are suicidal, and in the investigation that should follow any loss of life to suicide.
Support During Investigations
A recent HSIB report recommended that patients and their families or carers and victims’ families must be involved and supported throughout the investigation process.
This support can take many forms, but it should involve you feeling that your voice and your wishes are important to the investigating team and that your evidence is important to them. Meetings should be arranged for times that are convenient for you and all your questions should be answered honestly. You should always feel that you are being treated with respect, sympathy and compassion.
If you feel you aren’t getting the support you need, you can speak to the investigating team and find out what other support is available from them. If there isn’t more support available from them, they may be able to let you know about support and advocacy groups in your area.
Supported Living
Supported Living accommodation is a widely used form of support for people with mental health needs or people with a learning disability. A person in supported living has their own tenancy agreement and the support package is arranged separately. This ensures that if the tenant needs to change the support provider to one that better meets their needs, they do not have to move.
Most Local Authorities commission supported living services from a care provider and the housing may be provided by a local housing association or a private landlord. Sometimes the Local Authority owns the property. Housing benefit is provided to cover the cost of the rent. Sometimes people receive funding for their support through NHS Continuing Health Care or, in the case of people with mental health needs who have been in secure units, through section 117 funding. This can help with housing costs.
The amount of care and support offered depends on the needs of the residents. Usually, each resident has their own room and bathroom and the house also has communal spaces, like the kitchen, living room and garden.
The arrangements should allow the residents to live the most independent and fulfilled life possible, being supported in the home while being enabled to also access a wide range of outside activities in their local communities.
These homes work best when the residents and their families have a strong say in the way things are run and ideally the management should encourage this. Typically, the Local Authority Quality Assurance team may check on the quality of care, unlike residential care that is subject to annual reviews by the CQC. It can be very difficult for families if a loved one is harmed or dies in supported living and they may need to report their concerns to the local Safeguarding Adults Board if they feel that’s necessary.
Useful Organisations
You can find a list of useful organisations and charities here: Useful Organisations