Information for families following a bereavement

We are very sorry for your loss, and we know that this can be a very difficult and distressing time. We hope this information will help you understand what you can expect from the Trust and what happens next, including information about how to comment on the care your loved one received and what happens if a death will be looked into by a coroner. It also provides details of the processes involved if you have any significant concerns about the care we provided and gives you practical advice, support and information. 

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—please see www.gov.uk/after-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 Examiners Officer (MEO) will contact families via their preferred number once the medical cause of death certificate (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 may have regarding the cause of death.   They will then send the MCCD electronically to the Registry Office.  You will be asked to contact the Registry 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
  Monday–Friday, 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
  Monday–Friday, 9am–5pm (excluding bank holidays)
  T: 020 8321 5573
  E: chelwest.bereavementteam.wmuh@nhs.net

Medical examiner service

The medical examiner service is a new process for independently reviewing all hospital 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 in hospital. 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.

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 listed in this booklet.

Registering a death

The death needs to be legally registered within five days following the death of your loved one. This period may be extended in certain circumstances, such as when the coroner has been consulted. Further information can be obtained from the Bereavement team at the relevant hospital or from staff at the register office.

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 Monday–Friday, 8am–5pm (7pm on Thursdays) and Saturday 10am–6pm. You must book an appointment before going in by visitingwww.rbkc.gov.ukor by calling020 7361 4100.

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 Monday–Friday, 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 registrars:

• Full name of person who has died, including maiden name if applicable
• Date and place of birth and death
• Date and place of birth
• 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 or the bereavement team 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 firm and ask for details of their charges and the services they provide before making your selection.

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.

In the case of cremation, further forms are required from two doctors. One of the doctors will be a doctor/consultant who treated your loved one through their illness. The second doctor is an independent doctor who has not been involved in their care and who will speak to the doctor who signed the medical certificate of cause of death, regarding the patient’s medical history.

This means that the deceased cannot be moved to your choice of funeral director until these forms have been completed. The staff will do their best to get the forms ready for the funeral director as quickly as they can, however sometimes a short delay is unavoidable.

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 vital that you discuss this with the registrar at the town hall, and also your chosen funeral director, as various additional papers have to be issued. 

Most commonly, a Free From Infection (FFI) certificate has to be issued by the hospital, for which there is a fee, and an Out of England Order which must be issued by the coroner’s office.

Paying for the funeral

The cost of the funeral can vary. The cost of the funeral is usually met from the assets of the person who has died, but if there is no estate, the cost may be the responsibility of the person making the funeral arrangements. 

You can discuss ways of reducing the costs with the funeral directors. If you are in receipt of certain benefits, you may be entitled to help with the cost of the funeral. You can apply by calling 0200 151 2021 or completing the SF200 Funeral Expenses Payment claim form. This form can be obtained by visiting the Department for Work and Pensions (DWP) website at www.gov.uk.

Other things to be done:

• Returning the passport and driving licence of the person who has died
• Returning pension and allowance books
• Sending back 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 during the month of December. This 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 hospital during the previous twelve 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 enables us to learn from what we have done well and what we can improve. With this in mind, we will send you a survey no earlier than six weeks following your bereavement—this survey 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 at www.cwplus.org.uk.

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 duty of candour regulation/policy which is available at www.cqc.org.uk. Action Against Medical Accidents (AvMA) has produced information for families on duty of candour at www.avma.org.uk 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.

Details of the coroner’s office for Chelsea and Westminster Hospital:

• Westminster Coroner’s Court
  33 Tachbrook Street
  London SW1V 2JR
  T: 020 7641 1212

Details of the coroner’s office for 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 at the end of this leaflet.

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 Hospital
  E: chelwest.cwpals@nhs.net  
  T: 020 3315 6727
• West Middlesex University Hospital
  E: chelwest.wmpals@nhs.net
  T: 020 8321 6261

Making a complaint

We hope that we will be able to respond to any questions or concerns that you have. Additionally, you can raise concerns as a complaint at any point. If you do this, we will ensure that we respond in an accessible format, followed by a response in writing, when appropriate, to the issues you have raised.

The NHS complaints regulations (available at www.legislation.gov.uk) state that a complaint must be made within 12 months of the incident happening or within 12 months of you realising you have something to complain about. However, if you have a reason for not complaining to us sooner we will review your complaint and decide whether it would still be possible to fairly and reasonably investigate.

If we decide not to investigate in these circumstances you can contact the Parliamentary and Health Service Ombudsman (PHSO)—see www.ombudsman.org.uk.

Please note that you do not have to wait until an investigation is complete before you complain—both processes can be carried out at the same time. For example, a complaint can trigger an investigation if it brings to light problems in the care that were not previously known. 

However, if both the complaint and investigation are looking at similar issues, a complaint could be paused until the associated investigation is complete.

If you are not happy with the response to a complaint, you have the right to refer the case to the PHSO. They have produced a document My expectations for raising concerns and complaints for users of health services which sets out what should be expected from the complaints process—see www.ombudsman.org.uk.

Please see the frequently asked questions section at the end of this leaflet for more information on what to do if you are not happy with the responses you receive from us.

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 to81025.

For West Middlesex University Hospital, please contact the NHS Complaints Advocacy Service, which provides free independent and confidential help and advice and can supply an advocate to assist you. The NHS helpline telephone number is0300 330 5454and advice can also be found at www.nhscomplaintsadvocacy.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 for the elderly
T: 0800 169 6565
W: www.ageuk.org.uk

Down to Earth
Support for those in financial need to plan affordable, meaningful funerals
T: 020 8983 5055

Samaritans
T: 116 123
W: www.samaritans.org.uk

WAY Widowed and Young
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

• South East Advocacy Projects: Provides a range of general advocacy services across the south of England. See www.seap.org.uk for more information.
• Swan Advocacy: Provides advocacy services in North Somerset and South Gloucestershire, Somerset and Wiltshire, including generic advocacy and independent health complaints, advocacy to support people to complain about NHS services, and has expertise where bereavement or end-of-life care are a factor. See www.swanadvocacy.org.uk for more information.
• POhWER: Offers general advocacy services in the south and midlands and independent health complaints advocacy to support people to complain about NHS services in many London boroughs. See www.pohwer.net for more information.
• 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. It provides this service in Birmingham, Cambridgeshire, London, Northamptonshire, Peterborough and Suffolk. See www.nhscomplaintsadvocacy.org or call 0300 330 5454 for more information.

National organisations

• Action against Medical Accidents (AvMA): An independent national charity that specialises in advising people who have been 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. It can also refer to other specialist sources of advice, support and advocacy or specialist solicitors where appropriate. See www.avma.org.uk or call 0845 123 2352 for more information.
• Advocacy After Fatal Domestic Abuse: Specialises in guiding families through inquiries including domestic homicide reviews and mental health reviews, and assists with and represents on inquests, independent police complaints commission (IPCC) inquiries and other reviews. See www.aafda.org.uk or call 07768 386 922 for more information.
• Child Bereavement UK: Supports families and educates professionals when a baby or child of any age dies or is dying, or when a child or young person (up to age 25) is facing bereavement. This includes supporting adults to support a bereaved child or young person. All support is free, confidential, has no time limit, and includes face-to-face sessions and booked telephone support. See www.childbereavementuk.org or call 0800 028 8840 for more information.
• Child Death Helpline: Provides a freephone helpline for anyone affected by a child’s death, from pre-birth to the death of an adult child, however recently or long ago and whatever the circumstances of the death—a translation service is available to support those for whom English is not a first language. Volunteers who staff the helpline are all bereaved parents who are supported and trained by professionals. See www.childdeathhelpline.org.uk or call 0800 282 986  or 0808 800 6019 for more information.
• Cruse Bereavement Care: Offers free confidential support for adults and children when someone dies, by telephone, email or face-to-face. See www.cruse.org.uk or call 0808 808 1677 for more information.
• Hundred Families: Offers support, information and practical advice for families bereaved by people with mental health problems, including information on health service investigations. See www.hundredfamilies.org for more information.
• INQUEST: Provides free and independent advice to bereaved families on investigations, inquests and other legal processes following a death in custody and detention. This includes deaths in mental health settings. Further information is available on its website including a link to The INQUEST Handbook: A Guide For Bereaved Families, Friends and Advisors. See www.inquest.org.uk or call 020 7263 1111 for more information.
• National Survivor User Network: A network of mental health service users and survivors to strengthen users’ voices and campaign for improvements. It also has a useful page of links to user groups and organisations that offer counselling and support. See www.nsun.org.uk for more information.
• The Patients Association: Provides advice, support and guidance to family members with a national helpline providing specialist information, advice and sign-posting. This does not include medical or legal advice. It can also help you make a complaint to the CQC. See www.patients-association.org.uk or call 020 8423 8999 for more information.
• Respond: Supports people with learning disabilities and their families and supporters to lessen the effect of trauma and abuse, through psychotherapy, advocacy and campaigning. See www.respond.org.uk for more information.
• Sands: Supports those affected by the death of a baby before, during and shortly after birth, providing a bereavement support helpline, a network of support groups, an online forum and message board. See www.sands.org.uk or call 0808 164 3332 for more information.
• Support after Suicide Partnership: Provides helpful resources for those who are bereaved by suicide and signposting to local support groups and organisations. 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, which can be found at www.england.nhs.uk.

Future updates to this information

This information will be updated in the future as new guidance and processes become available, including:

• Outcome of the consultation on the serious incident framework
• Guidance on child death reviews
• Further relevant policy developments
• Ambition in the CQC report Learning from Deaths to include all providers of NHS-commissioned care, including primary care

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?

• Clinical commissioning groups (CCGs): Clinical commissioning groups pay for and monitor services provided by NHS trusts. Complaints can be made to the relevant CCG instead of us, if you prefer. Please ask us for contact details of the relevant CCG(s) or see www.england.nhs.uk/ccg-details 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.
• National Reporting and Learning System (NRLS): Members of the public can report patient safety incidents to the NRLS. This is a database of incidents administered by NHS Improvement, which is used to identify patient safety issues that need to be addressed. Please note that reports are not investigated or responded to. See www.improvement.nhs.uk for more information.
• Nursing and Midwifery Council (NMC): The NMC is the nursing and midwifery regulator for England, Wales, Scotland and Northern Ireland. It has introduced a new public support service that puts patients, families and the public at the centre of their work. More information can be found at www.nmc.org.uk in the Concerns about nurses or midwives section.
• 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. Unlike most healthcare, which is planned and arranged locally, specialised services are planned nationally and regionally by NHS England. If you wish to raise a concern about any specialised services commissioned in your area, please contact NHS England in the first instance by emailing england.contactus@nhs.net or calling 0300 311 22 33.
• 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.
• Healthcare Safety Investigations Branch (HSIB): The HSIB’s purpose is to improve safety through effective and independent investigations that don’t apportion blame or liability. HSIB investigations are for patient safety learning purposes. Anyone can share cases with HSIB for potential investigation—but an investigation is not guaranteed. See www.hsib.org.uk for more information.