Information for families following a bereavement

A message from our chief executive

I am sorry someone you care deeply about has died in our Trust. We are very sorry for your loss, and we understand that this is a very difficult and distressing time for you, your family and friends.

We hope this booklet will help you understand what you can expect from Chelsea and Westminster Hospital NHS Foundation Trust and give you the information you need about dealing with the formalities when someone dies, as well as some further information about bereavement support.

Our staff are happy to go through this information if it is helpful for you or if you need any further explanation. If you have clinical questions at any time, please get in contact with our PALS or Bereavement team and we can arrange a meeting with the appropriate team.

Yours sincerely

Lesley Watts
Chief Executive

Understanding what happened

As a family member, partner, friend or carer of someone who has died while in the care of our Trust, you may have comments, questions or concerns about the care and treatment they received. You may also want to understand more about the reasons for their death.

The staff who were involved in treating your loved one should be able to answer your initial questions. However, please do not worry if you are not ready to ask these questions straight away, or if you think of questions later—you will still have the opportunity to raise these with us (the Trust), when you are ready, through your named contact at the Trust.

It is also important for us to know if you don’t understand any of the information we provide. Please tell us if we need to explain things more fully.

Practical information, support arrangements and counselling

We can provide you with information about bereavement support services and practical advice about the things you may need to do following a bereavement. This could include:

• Making arrangements to see the person who has died
• Obtaining a medical cause of death certificate (MCCD)
• Registering the death

Please let us know if we can be of any help regarding these or other issues. The GOV.UK website also provides practical information on what to do following a death.

We also know that the death of a loved one can be very traumatic for families. This can be even more so when concerns have been raised, or when a family is involved in an investigation process.

Some families have found that it can be very beneficial to have counselling or someone else to talk to. You may want to discuss this with your GP, who can refer you to local support. Alternatively, there may be other local or voluntary organisations that provide counselling support that you may prefer to access. Some examples of organisations that may be able to help you are included later in this leaflet.

Trust Medical Examiner/Bereavement Team

On the first working day following the death of your loved one, please contact the Bereavement team, who will explain the process regarding the necessary paperwork you will need. While every effort is made to issue the death certificate promptly, sometimes there are delays due to the availability of the attending doctor—this process normally takes 48 hours to complete and may be longer if the coroner is involved. 

The Medical Examiner Officer (MEO) will contact families via their preferred number once the medical certificate of cause of death (MCCD) has been completed. During this call you will be provided with the cause of death documented on the certificate and the team may be able to answer any questions that you have regarding the cause of death. They will then send the MCCD electronically to the Register Office.  You will be asked to contact the Register Office to book an appointment to register the death. Families do not need to visit the Medical Examiner/Bereavement office to collect a death certificate.

The office locations and opening hours are:

Chelsea and Westminster Hospital

Medical Examiner/Bereavement office
Lower Ground Floor near the bottom of the escalators behind the fish tank
Mon–Fri, 8:30am–4pm (excluding bank holidays)

T: 020 3315 8650
E: chelwest.bereavement.team@nhs.net

West Middlesex University Hospital

Medical Examiner/Bereavement team
Ground Floor by main entrance
Mon–Fri, 8:30am–4pm (excluding bank holidays)

T: 020 8321 5573
E: chelwest.bereavementteam.wmuh@nhs.net

Medical examiner service

The medical examiner service has a statutory responsibility to independently review all hospital and community deaths.

The nominated family representative, usually the next-of-kin, may be contacted either by a medical examiner (ME) who is a senior independent doctor who has not been involved in the care of your loved one, or a medical examiner officer (MEO) working alongside them.

Their role is to scrutinise the care of all patients who die. They will review the cause of death with the doctors who cared for your loved one, and may talk with you. This conversation is to ensure that you understand what is written on the death certificate. It is also an opportunity for you to raise any other questions or feedback you have about the care provided to your loved one.

The medical examiner’s office is sensitive to religious needs surrounding burial.  In the majority of cases a review will be completed as soon as possible within 24 hours of the death. However there is a legal responsibility to ensure that the medical examiner has completed their review before a death certificate can be issued.

If the case needs to be referred to a coroner this can delay issuing a death certificate until the coroner has completed their review.

Chaplaincy service

The hospital chaplaincy service is able to offer support to all. They will be able to facilitate you in contacting the most appropriate representative for your needs. If you are feeling distressed and think it would help for a chaplain to be alongside you, you can call the chaplaincy team directly.

Urgent enquiries

• Chelsea and Westminster Hospital: Call 020 3315 8000 and ask for the on-duty chaplain
• West Middlesex University Hospital: Call 020 8560 2121 and ask for the on-duty chaplain

Non-urgent enquiries

At Chelsea and Westminster Hospital call 020 3315 8083 and at West Middlesex University Hospital call 020 8321 5447—the Chaplaincy team will call you back within 24 hours.

You may also email the chaplaincy team at chelwest.chaplaincy@nhs.net (for both hospitals).

Prayer spaces

All are welcome to visit the Trust’s prayer spaces, which offer the opportunity for peace and reflection.

• Chelsea and Westminster Hospital: The chapel (1st Floor, Lift Bank C) is primarily for Christian prayer, and the Blessed Sacrament is reserved there. The tent (4th Floor, between lift banks C and D) is primarily for Muslim and Jewish prayer.
• West Middlesex University Hospital: The multi-faith room is a private and quiet space for all and is situated on the Ground Floor by Outpatients 3.

Paying your respects

When your loved one has died, the ward concerned should be able to allow you to spend some time with them before they are transferred to the care of the hospital mortuary.

If you do not get the opportunity to do this, or would like another opportunity, the hospital provides a viewing room. This is a private room in the hospital where you are able to pay your respects to the person who has died. If you wish to make an appointment, please contact the Mortuary Team.

Chelsea and Westminster Hospital Mortuary
Mon–Fri, 8am–3pm (excluding bank holidays)

T: 020 3315 8225

West Middlesex University Hospital Mortuary
Mon–Fri, 8am–3pm (excluding bank holidays)

T: 020 8321 5876

Out-of-hours, weekends and bank holidays

Your loved one’s body can be collected from the hospital out-of-hours (outside Mon–Fri) in certain circumstances. If there are religious or legal reasons, the hospital is able to issue a medical certificate of cause of death and the registrars are available to issue the necessary paperwork. Hospital staff will be unable to release your loved one’s body out-of-hours if it is likely that the death will need to be referred to the coroner’s office.

Viewings should be discussed with the Trust site managers out-of-hours:

• Chelsea and Westminster Hospital: Call 020 3315 8000 and ask the operator to bleep the Trust site manager on 0111. Please be aware that the site manager will also be managing the hospital site and may need some time to arrange this.
• West Middlesex University Hospital: Call 020 8560 2121 and ask the operator to contact the ward where your loved one died. The nursing staff will arrange with you a convenient time for you to come and view your loved one in the hospital’s viewing room. Please be aware that the nursing staff will also be caring for patients on their ward and may need some time to arrange this.

Alternatively, you may prefer to wait and attend the funeral directors’ premises and spend time with your loved in their chapel or place of rest.

Who is able to register the death?

It is not necessary to register the death yourself. A relative or other person nominated by the family can register the death as long as they have the information and documentation listed in the At the Register Office section further in this document.

Registering a death

The death must be legally registered within five days of the medical examiner office submitting the medical certificate of cause of death (MCCD) to the Register Office. This period may be extended in certain circumstances, such as when a coroner has been consulted. Further information can be obtained from the Medical Examiner office or from staff at the Register Office.

Deaths occurring at Chelsea and Westminster Hospital

All deaths that occur at Chelsea and Westminster Hospital must be registered at:

Kensington and Chelsea Register Office
Chelsea Old Town Hall
King’s Road
London
SW3 5EE

T: 020 7361 4100

The entrance is on Chelsea Manor Street and the office is open Mon–Fri, 8am–5pm (7pm on Thursdays) and Saturdays 10am–6pm. You must book an appointment or call 020 7361 4100 before going in.

Deaths occurring at West Middlesex University Hospital

All deaths that occur at West Middlesex University Hospital must be registered at:

Hounslow Register Office
Feltham Lodge
Harlington Road West
Feltham
TW14 0JJ

T: 020 8583 2090

The office is open Mon–Fri, 9am–4:30pm (1pm on Wednesdays). You must book an appointment before going in.

After registering the death

The register office will give you:

• A green certificate for burial or cremation
• Copies of the death certificate

The registrar will ask you how many copies of the certificate you will need. A fee is payable for all copies. You may need a copy of the death certificate for the will and for any pension claims, insurance policies, savings certificates, premium bonds and banks or building societies.

At the Register Office

You should take other supporting documents such as the person’s birth and marriage certificates, passport, proof of address and NHS medical card. Further information required by the Register Office:

• Full name of person who has died, including maiden name if applicable
• Date and place of birth
• Date and place of death
• Last known address of the person who has died
• Last full-time occupation of the person who has died
• If married, full name, date of birth and occupation of any surviving widow or widower
• Details of any occupational pension that the deceased was receiving from public funds (eg army, Post Office worker)

Tell Us Once service

Tell Us Once is a government initiative which enables bereaved relatives to inform a range of government departments that a death has occurred, either with a single phone call or by using a dedicated, secure website. The system covers both local and national government departments, including pensions and benefits, tax, council tax, passports, driving licences, blue badges and others.

During the registration process, the registrar will log some details on the Tell Us Once system and give you a sheet with a unique reference number on it, together with contact details for the Tell Us Once team. You will then have 28 days to either telephone or use their website to complete the process and send notifications to the relevant organisations.

If you choose not to use Tell Us Once, the information the registrar has entered will be automatically wiped from the system after 28 days. The system is completely secure and information is only shared with your consent.

Tissue donation

Tissue donation can help transform the lives of thousands of people every year. Many tissues can be donated after death, including:

• Heart valves—within 48 hours after death
• Eyes—within 24 hours after death
• Bone—within 48 hours after death
• Skin—within 48 hours after death

If you would like to discuss the opportunity to donate tissue, please inform the nursing team looking after your loved one, the bereavement team or the medical examiner who can contact the regional tissue coordinator. Alternatively you can contact the NHS Blood and Transplant referral centre directly on 0800 432 0559.

Donating to medical science

The London Anatomy Office handles donations for all London medical schools. If your loved one completed the relevant paperwork for their body to be donated to medical science, you will need to contact the School of Anatomy as a matter of urgency after the death has taken place. You can contact the donation coordinator on 020 7848 8042 or email lao@kcl.ac.uk.

The anatomy office is based at:

Room 5.8
5th Floor
Hodgkin Building
Kings College London
Guy’s Campus
London
SE1 1UL

Please note that the School of Anatomy may not be able to accept all requests due to excluding medical factors. The consent for donation has to have come directly from the potential donor. Having power of attorney does not qualify you to make a decision to donate a body even if you believe it was what the deceased wanted.

Funeral arrangements

It is important to ascertain if the deceased made any arrangements or left instructions in a will for their funeral. Check also to see whether they had a prepaid funeral plan. 

You may wish to select a funeral director. It is advisable to contact more than one company and ask for details of their charges and the services they provide before making your selection. You can discuss with the funeral director ways of reducing costs. If you receive certain benefits, you may be entitled to help with the cost of the funeral.

The funeral director will make arrangements for relatives to see the deceased in their place of rest if this is required.

Please let the bereavement adviser know if the funeral service is to be a burial or cremation so that the relevant documents can be completed.

Repatriation (burials abroad)

If you wish to repatriate the body of your loved one—for example, move them to another country (including Scotland, Wales, Northern Ireland, and the Republic of Ireland)—it is essential that you consult both the registrar at the town hall and your chosen funeral director. This is because various additional documents will need to be issued. 

Typically, a Free From Infection (FFI) certificate is required, which is provided by the hospital for a fee. Additionally, an Out of England Order must be issued by the coroner’s office.

Paying for the funeral

The cost of the funeral can vary. It is typically covered by the estate of the person who has died, but if there are no assets, the person arranging the funeral may be responsible for the cost. You can discuss ways to reduce costs with the funeral director. 

If you receive certain benefits, you may be entitled to help with funeral expenses. You can apply by calling 0800 151 2012 or completing the SF200 Funeral Expenses Payment claim form.

Other things to be done:

• Returning the passport and driving licence of the person who has died
• Returning pension and allowance books
• Returning registration documents for vehicles
• Returning any NHS equipment

People and organisations to inform about the death of your loved one

Beyond immediate family and friends, the following checklist will give you a starting point for people and organisations you will need to inform about the death of your loved one.

• Bank/building society
• Credit card companies
• Royal Mail
• Department for Work and Pensions
• Utility companies
• Life insurance company
• Car insurance company
• Housing department
• Employer
• School/university
• Landlord
• Inland Revenue
• Council office
• TV licence authority
• Meals on wheels etc
• Social services

How you might feel

The death of someone close can be a devastating experience and can bring about stronger emotions than most people expect. Every bereavement is unique—our grieving, our reactions and our needs are all very distinctive. Even if you have known that someone was dying, there may still be a sense of shock when the death occurs. Initially you may feel numb, empty, unreal or full of pain. Later on these feelings may change to anger, panic, guilt, sadness or even relief. These are natural reactions to bereavement and are not a sign that you can no longer cope.

How children react

It may be tempting to exclude children from conversations about the person who has died and the funeral arrangements. Children are no different to adults when it comes to bereavement. There is no right way to react and every child will respond differently. Grieving children need honest and appropriate explanations, in language they can understand which acknowledges their loss. It is important to remember that children may not have the words to express their feelings and may show how they feel through behaviour. Do contact the school/nursery, so that the child can be supported there too.

Advice and support

Everyone has their own individual coping mechanism to deal with loss and there is no right or wrong way to feel or act. The turmoil of emotions that may be felt is often confusing and bewildering and sometimes it can be difficult to sort these feelings out. Relatives and friends are an invaluable source of support and help at this time. However, occasionally it can be easier to discuss problems with a stranger especially if they understand what you are going through. We have listed people and organisations that may be able to give either practical or emotional support later in this booklet.

Memorial events

We hold memorial services in the multi-faith chapel twice a year in June and December. The December service is a nationally-held service called Light up a Life. Relatives, friends and hospital staff attend to remember all those who have died in the hospital in previous months. If you would like further information, please ask the bereavement team.

Online bereavement survey

The care we provide to your loved one is very important to us—it helps us learn from what we have done well and where we can improve. With this in mind, we will send you an invitation to take part in an online Care at the End of Life survey no earlier than six weeks after your bereavement. This survey relates to the care received during the last hospital admission and your experience. It is completely anonymous, and you are under no obligation to complete it.

Honouring the memory of your loved one through a charitable donation

Losing a loved one is a time of great sorrow and reflection, and coping with bereavement is a very personal matter. Many bereaved families and friends find that channelling their energies into helping other people in a similar situation can be a positive way to help overcome their grief.

You can make a charitable donation to our charity CW+, which can go towards a specific ward, department, one of our major appeals, or for wherever the need is greatest within our hospitals.

Alternatively, please get in touch with CW+ to find out how to donate and what difference your donation could make to our patients and families. The charity can also liaise with funeral directors if you would like donations to be collected at the funeral. To find out more, please contact CW+ on 020 3315 6600 or email charity@cwplus.org.uk. You can also donate online.

CWPLUS registered charity n°1169897.

Reviews of deaths in our care

Case note reviews (or case record reviews) are carried out in different circumstances. Case note reviews are routinely carried out by our Trust on all deaths to learn, develop and improve healthcare, as well as when a problem in care may be suspected.

A clinician (usually a doctor), who was not directly involved in the care that your loved one received will look carefully at their case notes. They will look at each aspect of their care and how well it was provided. When a routine review finds any issues with a patient’s care, we contact their family to discuss this further.

Secondly, we also carry out case note reviews when a significant concern is raised with us about the care we provided to a patient. We consider a ‘significant concern’ to mean:

• any concerns raised by the family that cannot be answered at the time, or
• anything that is not answered to the family’s satisfaction or which does not reassure them

This may happen when a death is sudden, unexpected, untoward or accidental. When a significant concern has been raised, we will undertake a case note review for your loved one and share our findings with you.

Aside from case note reviews, there are specific processes and procedures that trusts need to follow if your loved one had a learning disability, is a child, or died in a maternity setting or as a result of a mental health-related homicide. If this is the case, we will provide you with the relevant details on these processes.

Investigations

In a small percentage of cases, there may be concerns that the death could be, or is related to, a patient safety incident. A patient safety incident is any unintended or unexpected incident, which could have, or did, lead to harm for one or more patients receiving healthcare. When there is a concern that a patient safety incident may have contributed to a patient’s death, a safety investigation should be undertaken. The purpose of a safety investigation is to find out what happened and why. This is to identify any potential learning and to reduce the risk of something similar happening to other patients in the future.

If an investigation is to be held, we will inform you and explain the process to you. We will also ask you about how and when you would like to be involved. We will explain how we will include you in setting the terms of reference (the topics that will be looked at) for the investigation. Investigations may be carried out internally or by external investigators, depending on the circumstances.

In some cases, an investigation may involve more care providers than just our Trust. For example, your loved one may have received care from several organisations (that have raised potential concern). In these circumstances, this will be explained to you, and you will be informed which organisation is acting as the lead investigator.

You will be kept up-to-date on the progress of the investigation and be invited to contribute. This includes commenting on the draft investigation report before it is signed off. Your comments should be incorporated in the report. After the report has been signed off, the Trust will make arrangements to meet with you to discuss further the findings of the investigation.

You may find it helpful to get independent advice about taking part in investigations and other options open to you. Some people will also benefit from having an independent advocate to accompany them to meetings. Please see details of independent organisations that may be able to help further in this leaflet. You are welcome to bring a friend, relative or advocate with you to any meetings.

Where the death of a patient is associated with an unexpected or unintended incident during a patient’s care, staff must follow the CQC duty of candour regulation/policy. Action Against Medical Accidents (AvMA) has produced information for families on duty of candour which is endorsed by the Care Quality Commission.

Coroners’ inquests

Some deaths are referred to the coroner—for example, when the cause of death is unknown or the death occurred in violent or unnatural circumstances. When a death is referred to the coroner they may request a postmortem examination. The coroner will then decide whether an inquest is required to establish the cause of death. An inquest is a fact-finding exercise which normally aims to determine the circumstances of someone’s death.

We will inform you if we have referred the death to the coroner. If we do not refer a death to the coroner, but you have concerns about the treatment we provided, you can ask the coroner to consider holding an inquest. It is a good idea to do this as soon as possible after your loved one has died, as delays in requesting an inquest may mean that opportunities for the coroner to hold a post mortem are lost.

If we have referred a death to the coroner, the coroner’s office will make direct contact with the next of kin to answer questions and provide guidance. The coroner’s office issues all the paperwork instead of the hospital.

Chelsea and Westminster Hospital

Westminster Coroner’s Court
33 Tachbrook Street
London
SW1V 2JR

T: 020 7641 1212

West Middlesex University Hospital

West London Coroner’s Court
Bagley’s Lane
London
SW6 2QA

T: 020 8753 6800

If you are seeking or involved in an inquest, you may wish to find further independent information, advice or support. There are details of organisations that can advise on the process, including how you can obtain legal representation listed further in this document.

Providing feedback, raising concerns and/or making a complaint

Providing feedback

We want to hear your thoughts about your loved one’s care. Receiving feedback from families helps us to understand the things we are doing right and need to continue, and the things that we need to improve.

Raising concerns

It is also very important to us that you feel able to ask any questions or raise any concerns regarding the care your loved one received. In the first instance, the team who cared for your loved one should be able to respond to these. After this, your named contact at the Trust is the best person to answer your questions and concerns. 

If you would prefer to speak to someone who was not directly involved in your loved one’s care, our Patient Advice Liaison Service (PALS) team can help.

The PALS service can:

• Give support and advice to patients, families and carers
• Listen to your concerns or queries
• Help sort out problems quickly on your behalf
• Provide information about hospital services

We also provide a drop-in service Mon–Fri, 9am–5pm (excluding bank holidays):

Chelsea and Westminster PALS
E: chelwest.cwpals@nhs.net  
T: 020 3315 6727

West Middlesex PALS
E: chelwest.wmpals@nhs.net 
T: 020 8321 6261

Making a complaint

We hope to address any questions or concerns you have, but you can also choose to raise a formal complaint at any time. If you do so, we will provide a response in an accessible format and follow up with a written reply when appropriate.

Under NHS complaints regulations, complaints should be made within 12 months of the incident or from when you first became aware of the issue. If there is a reason for not complaining sooner, we will review your complaint to decide if it is still possible to investigate fairly.

If we decide not to investigate, we will tell you why. If you are not satisfied with our outcome, you can contact the Parliamentary and Health Service Ombudsman (PHSO).

Please note that you do not need to wait for an investigation to be completed before making a complaint. Both processes can run at the same time. A complaint might also trigger an investigation if it brings to light issues not previously known. However, if both the complaint and investigation are looking at similar issues, the complaint may be paused until the investigation concludes.

If you are unhappy with the response to your complaint, you can refer the matter to the PHSO. Their guide My expectations for raising concerns and complaints explains what to expect from the complaints process.

For further details on what to do if you’re not satisfied with our responses, please refer to the frequently asked questions section further in this document.

Independent information, advice and advocacy

If you raise any concerns regarding the treatment we gave your loved one, we will provide you with information and support and do our best to answer any questions. However, we understand that it can be very helpful for you to have independent advice.

We have included details below of where you can find independent specialist advice to support an investigation into your concerns. These organisations can also help ensure that medical or legal terms are explained to you.

Some of the independent organisations may be able to find you an ‘advocate’ if you need support when attending meetings. They may also direct you to other advocacy organisations that have more experience of working with certain groups of people, such as people with learning disabilities, mental health issues or other specialist needs.

The list below does not include every organisation but the ones listed should either be able to help you themselves or refer you to other specialist organisations best suited to addressing your needs.

In addition, all local authorities (councils) should provide an independent health complaints advocacy service, which is independent of our Trust, that people can access free of charge.

For Chelsea and Westminster Hospital, please contact PoHWER London Independent Health Complaints Advocacy Service (IHCAS). Advice can be found at www.pohwer.net. They can be contacted on 0300 456 2370 or pohwer@pohwer.net and you can also text pohwer and your name and number to 81025.

For West Middlesex University Hospital, please contact VoiceAbility, which provides free independent and confidential help and advice and can supply an advocate to assist you. The NHS helpline telephone number is 0300 303 1660 and advice can also be found at www.voiceability.org.

We may also be able to provide you with details of other organisations and services that provide local support and, if relevant, we would be happy to talk these through with you.

Local/UK-wide support organisations

• Age UK—a national organisation offering support and advice for the elderly
  T: 0800 169 6565
  W: www.ageuk.org.uk
• Down to Earth—offers support for those in financial need to plan affordable and meaningful funerals
  T: 020 8983 5055
• Samaritans
  T: 116 123
  W: www.samaritans.org
• Widowed and Young (WAY)—support for men and women widowed under age 50
  W: www.widowedandyoung.org.uk
• Hounslow Bereavement and End of Life Support Service
  T: 020 8321 6300
• Brent Bereavement Services
  T: 020 8459 6818
• Asian Family Counselling Service
  T: 020 8813 9714
  W: www.asianfamilycounselling.org
• Winston’s Wish—telephone help and advice, especially for bereaved children and siblings
  T: 08088 020 021
  W: www.winstonswish.org
  E: ask@winstonswish.org
• London Friend LGBT Health and Wellbeing—offering support to the LGBT community and their friends and family
  T: 020 7833 1674
  W: www.londonfriend.org.uk
• Switchboard LGBT+ Helpline—information, support and referral service open 10am–11pm, 24/7
  T: 0300 330 0630
  W: switchboard.lgbt
• At a Loss—enabling the bereaved to receive the support they need
  W: www.ataloss.org
• Independent Age—information on subjects including welfare, legal and financial matters
  W: www.independentage.org
  T: 0800 319 6789

See www.gov.uk/after-a-death for further information on what needs to happen next.

Local/regional organisations

• Advocacy for All: Provides a range of advocacy services across South East and South West London, Kent, and Medway. Services include general advocacy, mental health advocacy, independent health complaints advocacy, and support for people with learning disabilities and autism. For more information, visit www.advocacyforall.org.uk.
• Swan Advocacy: Provides advocacy services in North Somerset, Somerset, and Wiltshire, including generic advocacy, independent health complaints advocacy, and support where bereavement or end-of-life care is a factor. For more information, see www.swanadvocacy.org.uk.
• POhWER: Independent advocacy services for individuals facing challenges in expressing their views or accessing support. Services include general advocacy across the South and Midlands and independent health complaints advocacy for people wishing to raise concerns about NHS services in many London boroughs. For more information, visit www.pohwer.net or call 0300 456 2370.
• VoiceAbility: Provides NHS complaints advocacy giving telephone support to make a complaint about the NHS, signposting different options and providing information and contact details for one-to-one support to make a complaint. They provide this service across England and Scotland. See www.voiceability.org or call 0300 303 1660 for more information.

National organisations

• Action against Medical Accidents (AvMA): An independent national charity that specialises in advising people affected by lapses in patient safety. It offers free advice on NHS investigations, complaints, inquests, health professional regulation, and legal action regarding clinical negligence. Most advice is provided via its helpline or in writing, but individual advocacy may also be arranged. AvMA can refer to specialist sources of advice, support, or solicitors where appropriate. See www.avma.org.uk or call 0345 123 2352 for more information.
• Advocacy After Fatal Domestic Abuse (AAFDA): Specialises in guiding families through inquiries such as Domestic Homicide Reviews, mental health reviews, and inquests. AAFDA also assists with and represents families in Independent Office for Police Conduct (IOPC) inquiries and other reviews. For more information, visit www.aafda.org.uk or call 07887 488 464.
• Child Bereavement UK: Supports families and educates professionals when a baby or child of any age dies, is dying, or when a child or young person (up to age 25) is facing bereavement. This also includes helping adults support a bereaved child or young person. All services are free, confidential, and without time limits, offering face-to-face sessions and booked telephone support. For more information, see www.childbereavementuk.org or call 0800 02 888 40.
• Child Death Helpline: Provides a freephone helpline for anyone affected by the death of a child, from pre-birth to adult, no matter how recently or long ago the death occurred, or the circumstances. A translation service is available for those whose first language is not English. The helpline is staffed by trained volunteers who are all bereaved parents. For more information, see www.childdeathhelpline.org.uk or call 0800 282 986 (landline) or 0808 800 6019 (free from a mobile).
• Cruse Bereavement Care: Offers free, confidential support for adults and children when someone dies, available by telephone, email, or face-to-face. For more information, visit www.cruse.org.uk or call 0808 808 1677.
• Hundred Families: Provides support, information, and practical advice for families bereaved by individuals with mental health problems. They offer guidance through health service investigations and other reviews. For more information, visit www.hundredfamilies.org.
• INQUEST: Provides free and independent advice to bereaved families on investigations, inquests, and other legal processes following a death in state custody, detention, or mental health settings. The organisation offers guidance on the inquest process and options for legal representation. Further information is available on their website, including The INQUEST Handbook: A Guide For Bereaved Families, Friends and Advisors. For more information, see www.inquest.org.uk or call 020 7263 1111 (Tue/Thu).
• National Survivor User Network (NSUN): A network for mental health service users and survivors aimed at strengthening the voices of people with lived experience of mental distress. NSUN campaigns for improvements in mental health services and policy. The network also provides a resource directory with links to user groups and organisations that offer support and counselling. For more information, visit www.nsun.org.uk.
• The Patients Association: Provides free, confidential advice, support, and guidance to patients and their families through a national helpline. It offers information on healthcare topics such as making complaints, accessing medical records, and changing providers, but does not provide medical or legal advice. It also assists with making complaints to the CQC. See www.patients-association.org.uk or call 0800 345 7115 for more information.
• Respond: Provides psychotherapy, advocacy, and support for people with learning disabilities or autism who have experienced trauma or abuse. For more information, visit www.respond.org.uk or call 020 7383 0700.
• Sands: Supports those affected by the death of a baby before, during, or shortly after birth. It offers a free bereavement support helpline, local support groups, an online community, and message boards. See www.sands.org.uk or call 0808 164 3332 for more information.
• Support after Suicide Partnership (SASP): Provides resources and guidance for those bereaved by suicide, including signposting to local support groups and organisations. They aim to ensure that those affected receive timely and appropriate support. See www.supportaftersuicide.org.uk for more information.

Acknowledgement and thanks

The NHS is very grateful to everyone who has contributed to the development of this information. In particular, they would like to thank all of the families who very kindly shared their experiences, expertise and feedback to help develop this resource.

This information has been produced in parallel with Learning from Deaths: Guidance for NHS trusts on working with bereaved families and carers.

Frequently asked questions (FAQs)

What should I do if I have concerns about my relative/friend’s treatment contributing to their death?

Please speak to your named contact at the Trust, staff involved in the treatment of your loved one, or the Patient Advice and Liaison Service (PALS). If necessary, you can ask for an investigation. You can also make a formal complaint, either to the Trust directly or to the relevant clinical commissioning group (CCG)—further details below.

Who orders a post-mortem or inquest?

In some cases we refer deaths to the coroner who may then order a post-mortem to find out how the person died. Legally, a postmortem must be carried out if the cause of death is potentially unnatural or unknown. The coroner knows this can be a very difficult situation for families and will only carry out a postmortem after careful consideration. A family can appeal this in writing to the coroner, giving their reasons, and should let the coroner know they intend to do this as soon as possible. However, a coroner makes the final decision and, if necessary, can order a postmortem even when a family does not agree. Please note that the body of your loved one will not be released for burial until it is completed, although a coroner will do their best to minimise any delay to funeral arrangements. You speak directly to the local coroner’s office about having a postmortem and/or inquest.

What should I do if I think the treatment was negligent and deserving of compensation?

Neither patient safety investigations nor complaints will establish liability or deal with compensation, but they can help you decide what to do next. You may wish to seek independent advice from Action against Medical Accidents (see Independent information, advice and advocacy above). They can put you in touch with a specialist lawyer if appropriate. Please note that there is a three-year limitation period for taking legal action.

What should I do if I think individual health professionals’ poor practice contributed to the death and remains a risk to other patients?

Lapses in patient safety are almost always due to system failures rather than individuals. However, you may be concerned that individual health professionals contributed to the death of your loved one and remain a risk. If this is the case, you can raise your concerns with us or go directly to one of the independent health professional regulators listed below.

Where can I get independent advice and support about raising concerns?

Please see Independent information, advice and advocacy above, which details a range of organisations. Other local organisations may also be able to help.

What other organisations may be of help?

• Integrated Care Boards (ICBs): Responsible for commissioning and overseeing services provided by NHS trusts. If you prefer, complaints can be directed to the relevant ICB instead of us. Please ask us for contact details of the appropriate ICB(s), or visit www.england.nhs.uk/integratedcare for more information.
• Parliamentary and Health Service Ombudsman (PHSO): The PHSO makes final decisions on complaints that have not been resolved by the NHS in England and UK government departments. They share findings from their casework to help Parliament scrutinise public service providers. They also share their findings more widely to help drive improvements in public services and complaint handling. If you are not satisfied with the response to a complaint, you can ask the PHSO to investigate. See www.ombudsman.org.uk or call 0345 015 4033 for more information.
• Care Quality Commission (CQC): The CQC is the regulator for health and social care in England. The CQC is interested in hearing about concerns as general intelligence on the quality of services, but they do not investigate individual complaints. See www.cqc.org.uk for more information.
• Learn from Patient Safety Events (LFPSE) service: Members of the public can report patient safety incidents to the LFPSE service, which collects data on incidents across the NHS. This data is used to identify and address patient safety issues. Please note that reports are not investigated individually, but contribute to national learning. See www.england.nhs.uk/patient-safety for more information.
• Nursing and Midwifery Council (NMC): The NMC is the nursing and midwifery regulator for England, Wales, Scotland and Northern Ireland. They offer a public support service that provides personalised assistance to patients, families, and the public during investigations. For more information, visit the Concerns section at www.nmc.org.uk.
• NHS England specialised services: Specialised services support people with a range of rare and complex conditions, such as rare cancers, genetic disorders or complex medical or surgical conditions. These services are often commissioned nationally by NHS England, though some responsibilities have been transferred to Integrated Care Boards (ICBs). If you wish to raise a concern about specialised services in your area, please contact NHS England by emailing england.boffice_speccom@nhs.net.
• General Medical Council (GMC): The GMC maintains the official register of medical practitioners within the United Kingdom. Its statutory purpose is to protect, promote and maintain the health and safety of the public. It controls entry to the register and suspends or removes members when necessary. Its website includes guides for patients and the public, which can help you decide which organisation is best placed to help you. More information can be found at www.gmc-uk.org in the Concerns section.
• Health Services Safety Investigations Body (HSSIB): The HSSIB’s purpose is to improve safety through independent investigations that focus on learning, without assigning blame or liability. These investigations address patient safety concerns across England. Anyone can share concerns for potential investigation, but investigations are not guaranteed. See www.hssib.org.uk for more information.