You have been given this booklet to advise you about the process following a death at the Norfolk and Norwich University Hospitals NHS Foundation Trust (NNUH).
Many different staff will have been involved in the care of your spouse/partner/relative/friend while they were a patient at NNUH. On behalf of all of them we wish to express our condolences, sympathy and concern for you at this time.
We know this can be a very difficult and distressing time and we hope this booklet will help you understand what you can expect from us.
This booklet has been prepared to offer you guidance in making the immediate arrangements. It describes the important tasks such as making funeral arrangements, registering the death, and provides other useful practical information and contact details.
The booklet also aims to explain what happens next; including information about how to comment on the care your loved one received, the Medical Examiner Service and what happens if a death is investigated by His Majesty’s (HM) Coroner. It also provides details of the processes involved if you have significant concerns about the care provided and gives you practical advice, support and information.
Within the pack is information on loss and grief including contact numbers for local and national organisations that may be able to provide help and support over the days and weeks to come. Please be aware that bereavement can leave people feeling very isolated, so don’t be afraid to ask for help and advice: any question or query is important.
Immediate Arrangements
The practical things to do following a death are contacting a Funeral Director and speaking to the hospital Bereavement Team.
The Funeral Director
There is no need to wait until you have registered the death before contacting the Funeral Director, as you will find they will be able to guide you through every detail in making the funeral arrangements and offer general advice and guidance. You may wish to approach more than one Funeral Director to get an estimate of their costs or scope of service before making your final choice. You can find names and contact details of many suitable firms via the internet.
Alternatively, your bereavement advisor can provide you with names of funeral directors within your chosen area, but they are not able to make any personal recommendations.
The advertisements in this pack are not endorsed directly by the NNUH but are there to assist you in finding relevant and timely information.
The Hospital Bereavement Team
The Bereavement Advisors are a dedicated team who are pleased to offer help, advice and support for relatives and carers of those who have died in our care.
They will explain the procedures for registering the death of your loved one, contacting a Funeral Director and advise on the arrangements for the return of personal belongings if you have not already been given these from the ward.
The Bereavement Team are available to speak to you over the telephone between 9.00am - 4.00pm, Monday to Friday except for Bank Holidays.
Please telephone (01603) 287165; 287166; 289440; or 287465; to speak to an advisor or leave your contact details and the name of your loved one, together with any funeral arrangements if known.
If you are connected to the answerphone, it is because the advisors are away from their desk or speaking to another family. We aim to call you back on the same day as your message has been left, or within 2 working days.
Unless referred to a HM Coroner, the doctor responsible for the care of the patient will complete the Medical Certificate giving the cause of death. This process can often take two or more working days.
The process for registering a death takes place face to face and your bereavement advisor will let you know when the medical certificate is with the Registration Service so that you can register the death.
Registering a Death
You should not book an appointment to register until you have been advised that a doctor has issued a medical certificate of cause of death (or the Coroner has issued paperwork instead). To book a death registration appointment call 0344 800 8020. Or visit their website: www.norfolk.gov.uk
All deaths, except those referred to the Coroner, should be registered within 5 days of the death. The Bereavement Advisor will explain how to do this and who may register a death. Please do not worry if it is not possible to achieve this within the time frame.
Documents and information needed to register the death
The Registrars offer a ‘Tell Us Once’ service which informs national and local government services of the death; when you make your appointment, you will be advised of the information to have available but for reference these would be:
• Full name of the deceased and maiden name (if applicable)
• Date and place of birth - birth certificate (if available)
• Home address
• Details of occupation or last occupation, if retired
• Full name of spouse and their date of birth (if applicable)
• Medical Card (if available); passport and driving licence
Local Registrars Offices
Norfolk Registration Office
Norwich Archive Centre Registration Office
The Archive Centre, County Hall, Martineau Lane, Norwich NR1 2DQ
For opening hours please visit www.norfolk.gov.uk or call the Customer Service Centre on 0344 800 8020.
Downham Market
Downham Market Library
78 Priory Road
Downham Market
PE38 9JS
King’s Lynn
The Town Hall
Saturday Market Place
King’s Lynn
PE30 5DQ
Diss Dereham
Council Offices
Market Hill
Dereham Library
59 High Street
Diss Dereham
IP22 4JZ
North Walsham
18 Kings Arms Street
NR19 1DZ
Thetford
Thetford Library
North Walsham Raymond Street
NR28 9JX
Fakenham
Fakenham Connect
Thetford
IP24 2EA
Great Yarmouth
The Library
Oak Street Tollhouse Street
Fakenham
NR21 9SR
Strictly by appointment
Great Yarmouth
NR30 2SH
Strictly by appointment for Coroner’s referrals for Coroner’s referrals
You will receive from the Registrar:
• Certificate of Burial or Cremation: this certificate is green and is required by the Funeral Director before the funeral takes place.
• Social Security Certificate (Form BD8): this should be sent to the Benefits Office together with any other benefits cards held by the deceased.
• The Death Certificate: This is a copy of the entry in the Death Register. A copy and any additional copies will cost £11.00 each. You should discuss how many copies you may need with the Registrar.
Other Documentation
After a death it is necessary to return certain documents and other items belonging to the deceased:
• Social Security payment cards
• Registration documents of car, to change ownership
• NHS equipment including mobility and hearing aids
• Season tickets
The following people and organisations may need to know about the death:
• Solicitor
• Bank, Building Society, Insurance Company
• Employers and Trade Unions
• Schools, College, University attended
• Any other hospital the person was attending
• Gas / Electricity / Water / Telephone / TV Licence
• Professional Organisations
Please note most organisations will not accept a photocopy of the death certificate. In addition, it may be useful to include the National Insurance Number of your relative/friend in any correspondence with government departments.
Arranging a Funeral
If the deceased person has made a will, this may contain important information about their wishes for their funeral.
Once you have registered the death, the green Certificate of Burial or Cremation will be sent to your Funeral Director. The Mortuary requires your chosen Funeral Director to bring a suitably authorised form with them allowing them to collect and take your loved one into their care.
In the event that a death is referred to the Coroner, the Coroner’s office will advise you on what to do. Your Funeral Director will liaise with the Coroner on your behalf.
You may want to discuss the funeral with your religious representative, or you may prefer for the Funeral Director to do this on your behalf. They can also arrange a non-religious funeral if this is your wish.
There may also be consideration given to those families that do not wish to use the services of a funeral director and instead arrange those duties and actions themselves. There is information on the internet as to how this may be achieved but the Mortuary and Bereavement Office may also be contacted, and the staff can advise you further as you require.
Cremation
By law, Doctors have to follow the Cremation (England and Wales) Regulations 2008. To process the additional cremation documentation from the hospital medical staff, through to the final check by an independent doctor at the crematorium (the medical referee) it can take approximately 7 working days. The Bereavement Advisors will commence this process when they are advised the funeral will be a cremation.
Cremation fees and guidance
The completion of cremation certificates does not fall within the NHS duties of a doctor. Advice issued by the British Medical Association (BMA), stipulates that the fees applicable for forms completed by doctors have been agreed with the National Association of Funeral Directors - (NAFD), the National Society of Allied and Independent Funeral Directors - (SAIF), and Co-operative Funeral Care.
Doctors at this Trust follow this guidance. A link to the guidance is provided below: www.bma.org.uk/advice/employment/fees/cremation
Paying for a funeral
If you arrange for a funeral, you are responsible for paying the costs involved. It is advisable to check if there are sufficient funds to cover the costs. If you receive certain kinds of benefit/s or if for any other reason you do not have enough money to pay for the funeral, you should seek advice from the Department for Work and Pensions.
Notification of a death in a newspaper
You may wish to ask the Funeral Director to guide you on wording and arrangements. Your chosen Funeral Director will be able to place the notification in a newspaper on your behalf.
Medical Examiners are senior Doctors independent of the treating medical team. Supported by Medical Examiner Officers, they review every death that occurs within the hospital and community.
The role of the Medical Examiner Service is to:
• Provide the bereaved families with the opportunity to raise any concerns about care of their loved one in their final illness.
• Explain and ensure accuracy of the Medical Certificate of Cause of Death.
• Ensure that those deaths which are required by law to be notified to the Coroner, are appropriately referred.
A Medical Examiner or Medical Examiner Officer will contact you or a designated family member by telephone to discuss these matters. This is a routine call for all who have lost a loved one and will normally take just a few minutes.
The team will often be able to reassure you about matters of concern and explain medical issues (such as technical terms on the Medical Certificate of Cause of Death).
The Medical Examiner Service can also escalate matters that may need further review, and signpost you to other services to support you.
Care in the Mortuary
When the deceased is in the care of the Mortuary staff, they will be looked after with dignity and respect in a safe, peaceful and clean environment.
Viewing arrangements - Arranging to see your spouse/partner/relative/friend within the Hospital
Some people can see their spouse/relative/partner/friend in the ward that they have died. When this is not possible, the Mortuary staff can provide the bereaved with a peaceful and private facility in the Mortuary, in which a viewing can take place. However, many people prefer to wait until the deceased person is in the care of their chosen funeral director before arranging a viewing. Please discuss this with your chosen funeral director if this is your preference.
If you would like to view your spouse/relative/partner/friend in the Mortuary’s viewing suite, then this can be arranged by contacting the Mortuary.
Please be aware that if the deceased has been referred to the Coroner, a viewing is not usually permitted until we receive permission from the Coroner, this usually is not received until after the completion of any expected examination procedures. In the event that pre-examination viewing is permitted, the viewing will be supervised and supported throughout by a member of the Mortuary team.
• Viewing within the Mortuary’s viewing suite is strictly by appointment only and normally arranged between 1.30pm – 4.00pm Monday, Wednesday and Friday.
• Please telephone the Mortuary team directly on (01603) 287192 to arrange a date and time and date to attend.
• Outside normal opening hours the department has an emergency on call service in which it may be possible to accommodate a viewing.
• To request this out of hours emergency service contact the hospital switchboard (01603 286286) and ask for the emergency, on call Mortuary Technologist.
• If you attend a viewing in the Mortuary, you will be met by a member of the team in a private, dedicated waiting area and accompanied to the Mortuary viewing suite.
• The suite is a private, calm and quiet room located within the Mortuary department.
• Trained staff will be there to support relatives through this process.
• Please understand that in some cases there may be small changes evident in the appearance of the deceased patient.
• The Mortuary staff will prepare you as much as they can and will be available to answer any questions or concerns throughout your viewing.
On occasion when there have been a significant number of deaths in the community and Hospital, it may not be possible to accommodate some deceased patients within the permanent Hospital Mortuary facilities.
In these circumstances you should be aware that it may be necessary for us to transfer the deceased patient to a designated Funeral Director or other temporary facility.
You have our assurance however, that this process is carefully managed and that the transfer and facilities of the Funeral Directors ensure continuation of care, dignity and respect for the deceased patient. Your designated Funeral Director will be able to collect directly from these facilities as required.
Deaths referred to HM Coroner
By law, if the doctor is not able to issue a death certificate (for example, if someone dies suddenly and unexpectedly in hospital or following an accident or other unnatural event), they are legally required to inform the Coroner.
• The Coroner is a lawyer working with a team of Officers to investigate unnatural, unexpected or sudden deaths.
• Having been informed of the death, the Coroner will decide whether the doctor can issue the Medical Certificate of Cause of Death based on the opinion of the doctor and the treatment they gave the deceased or whether a post-mortem examination is required to establish the cause of death.
• The Coroner does not require the consent of relatives or carers for this examination to be performed but does have a duty to notify relatives when and where the examination will take place.
• The Coroner will also contact you after any confirmed post-mortem examination to discuss the clinical and pathological findings.
• There may also be times where the cause of death at post-mortem is not immediately clear to the attending pathologist and further tests are required.
• These tests will often include the Pathologist taking some small tissue samples or requiring specific laboratory tests on a certain organ.
• In these cases, the Coroners will contact you to discuss what you wish to happen to these tissues or organs once their examination is complete.
• They will ask you to complete a form to outline those wishes which is then forwarded to the Mortuary to ensure that those wishes are fulfilled ahead of the Coroner giving clearance for the deceased to be collected by the allotted funeral agency.
**If we do not refer a death to the Coroner and you have concerns about the treatment provided, you can ask your Bereavement Advisor to arrange for you speak to a Medical Examiner, or a Medical Examiner Officer. It is a good idea to do this as soon as possible after your loved one has died.
Inquests and formal identification of deceased patients
The Coroner is represented by the Coroner’s Officers, who may need to talk to you about the circumstances leading up to your relative’s death. They will advise you when the cause of death has been established and when they have issued their documentation to the Registration Service at County Hall, Norwich, so that you can make the appointment with the Registrar to register the death.
Sometimes it is necessary to hold an inquest after a death. In this case the Coroner can normally issue a burial or cremation certificate once the post-mortem examination is complete. A formal identification of the deceased prior to the post-mortem examination is required. The relative assisting with this will be accompanied to the viewing and the procedure will be explained by the Mortuary staff.
Some deaths are referred to the Coroner, for example where 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 post-mortem examination.
The Coroner will then decide whether an Inquest is required, to establish the cause of the death. An Inquest is a ‘fact finding’ exercise which normally aims to determine the circumstances of someone’s death.
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, at the end of this booklet.
Contacting the Coroner and Coroner’s Officers
The main telephone number for the Coroner’s office is Norwich (01603) 774773.
There is an answerphone for leaving a message if the line is busy or staff are unavailable.
Contacting the Funeral Director
We recommend that you make early contact with your Funeral Director, advising them that the death has been referred to the Coroner. They will be able to liaise with the Coroner’s department about releasing the deceased patient into their care in plenty of time before the funeral.
Post-mortem Examinations
Most post-mortems are requested by HM Coroner, as a legal requirement, to ascertain an unexpected cause of death.
Sometimes a request for a post-mortem examination is made by the relatives or by the doctor treating the deceased patient. This may be requested when the cause of death is known or established but the treating doctors feel they may be able to increase medical knowledge and/or study the effect of any treatment received.
The relatives may also wish to request this in order to gain a better understanding of what may have happened.
The written permission of the next of kin will be obtained by means of a comprehensive consent form completed by a member of the Mortuary Team or Bereavement Advisors who will also fully explain the nature of the procedure and your wishes around the extent of the examination and tissues taken etc. The consent form is designed to be flexible, and any subsequent examination of the patient can be restricted or limited if you wish. The hospital will issue the Medical Certificate of the Cause of Death prior to the request of a hospital/consented post-mortem examination.
A post-mortem examination should not delay the funeral arrangements, but a member of the Mortuary or Bereavement team will be able to advise you on scheduling and time frames around examination.
Understanding what happened
As a family member, partner, friend or carer of someone who has died whilst in the care of the NNUH, 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.
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 relevant contact.
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.
The Gov.UK website: (https://www.gov.uk/after-a-death) 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 counselling or having someone else to talk to can be very beneficial. 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 would prefer to access. Some examples of organisations that may be able to help you are included later in this booklet.
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 NHS trusts on a proportion of all their 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 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.
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. Patient safety incidents and investigations will need a review after September when new regulation comes out.
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. Where 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 any 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 the NNUH. 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 told which organisation is acting as the lead investigator.
You will be kept up to date on the progress of the investigation and will 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 further discuss 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, later in this booklet. 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: (www.cqc.org.uk/guidanceproviders/regulations-enforcement/regulation-20-dutycandour)
AvMA (Action Against Medical Accidents: (www.avma.org.uk/) has produced information for families on Duty of Candour which is endorsed by the Care Quality Commission.
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 (i) the things we are doing right and need to continue; and (ii) the things we need to improve upon.
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 that cared for your loved one should be able to respond to these.
After this, your relevant 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 will be able to help.
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 where appropriate to your needs), to the issues you have raised.
The NHS Complaints Regulations
www.legislation.gov.uk/uksi/2009/309/pdfs/uksi_20090309_ en.pdf) state that a complaint must be made within 12 months of the incident happening or within 12 months of you realising you have a complaint. 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: www.ombudsman.org.uk)
Please note 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 about.
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 Parliamentary and Health Service Ombudsman. PHSO has produced ‘My expectations for raising concerns and complaints’ for users of health services. It sets out what you should expect from the complaints process. www.ombudsman.org.uk/publications/my-expectations-raisingconcerns-and-complaints
Please see the frequently asked questions section at the end of this pack for more information on what to do if you are not happy with the responses you receive from us.
LOSS
Depressed
ORGANISA ON DISORGANISATION
Yearning
Withdrawn
The experience of grief
GROWTH
Restoration
Hope
Reconnection
Optimism
DETERIORATION
RESURFACING PROBLEMS
Disturbed Sleep
Loss of Appetite
Self Criticism
Apathy
Sadness
Exhaustion
Questioning
This diagram is intended to demonstrate that there is no set pattern or experience of grief. Maybe you will recognise and identify with some of this in your experiences and know that others have felt something similar.
Moving towards a sense of recovery where you learn to live with your relative/friend’s death can sometimes feel like finding a ‘new normal’. Grief knocks you off balance. You may find yourself having to cope with a world which feels very different as you go through a process of mourning.
Grief occurs after any loss but is felt most strongly after the death of someone we love, regardless of the length of time we have known them. It is a natural process, which takes time to get through, and one which cannot be hurried.
Coping with a death
Grief is a painful process. Everyone is different but there are some common experiences such as:
• Anxiety
• Vivid memories
• Problems with sleeping - sleep patterns may be altered, and some people experience very vivid dreams
• Feeling of sadness and longing
• Mood swings
• Feelings of anger
• Feelings of guilt or shame
• Changing personality/behaviour
• Difficulty in caring for others
• Work difficulties
• It may be difficult to concentrate or relax
• Abrupt changes of emotion are normal and an essential part of coming to terms with the death
• Sudden outbursts of tears which can be embarrassing
• Being quiet and withdrawn, perhaps remembering the good and bad times with the deceased patient
In the initial shock of a loss, people can feel a sense of numbness and disbelief. You may feel detached and separate from others you love, even if they are physically close. Life can feel very chaotic and occasionally overwhelming. You may not feel anything at all.
In the first days following a death it can be difficult to believe the death has occurred and there may be a feeling of numbness. The practical aspects of making contact with relatives and friends, organising and attending the funeral can be helpful in coming to terms with the death, even though they may be painful to do.
Alongside the deep pain and sadness, you may feel agitated and angry about what has happened, and you may even feel anger towards the person who has died. This can and may result in feelings of guilt and further detachment.
You may think that you are going mad, that things do not make sense, you cannot concentrate. You may struggle to organise things as you have done before. Over time these agitated feelings may shift to fatigue, depression and exhaustion and then move towards a position of reflection, feeling calmer and better able to try new things.
You may fear forgetting or remembering wrongly, and this can and does happen. Trust there will always be a part of them in your life. As part of the cycle of any loss, in times of pain and weakness, it is not unusual for old feelings to resurface (or memories of earlier losses) and to feel that things are deteriorating emotionally. This may take you back through things you may feel you have already overcome.
Trust in your own resources, get plenty of rest and use the support available to you; family, friends and more formal support agencies (contact details at the back of the booklet).
In grief you will experience different kinds of coping and shift back and forth between these two approaches. It’s okay to experience grief in doses. At times you will face your loss headon, and others you’ll focus on fulfilling practical needs and life tasks, and once in a while you will need to take a break and find respite.
Different cultures deal with death in their own ways. The feelings experienced by bereaved people in different cultures may be similar, but their ways of expressing them are very different.
What
may help during this time?
There are some fundamental things you can do to help yourself in regard to your overall wellbeing:
• Don’t be rushed by the expectations of others. There are no rules.
• Try not to hurry the healing process, take it at your own pace.
• Do try to look after yourself. Get plenty of rest. Try spending a little time with others.
• Ask for help and support from family, friends or a support group.
• Do talk about the person who has died to people who understand.
• Ask for help.
The following website provides some very useful information: www.nhs.uk
The NHS choices website is an excellent source of information for the range of emotional concerns and challenges which are common in bereavement.
As well as information on grief and bereavement, there is an excellent Moodzone section which has a self-assessment tool, as well as valuable information on improving your wellbeing.
If you don’t have a computer or feel confident using the internet, local libraries can help you access this information.
The ‘Five ways to wellbeing’ have been identified through extensive reviews of research and expert opinion as simple actions that anyone can take that will have a positive impact on their day-to-day wellbeing. Small changes can make a big difference.
Building just five actions into our daily lives can increase wellbeing. This is all about taking action to make change – the more you put in, the more you are likely to get out.
Planning and preparation are key, so remember to use a diary to schedule planned activities and involve your friends and family. Positive mental wellbeing does not mean that you never experience feelings or situations that you find difficult, but it does mean that you feel you have the resilience to cope when times are tougher than usual. Finally, know that you will not always feel as bad as you do now.
Getting through each day after a death may feel like a challenge, but by focusing more and more on today and less on yesterday you will make progress. The landscape of your life may have changed dramatically but the changes will slowly start to feel more bearable.
If you are struggling with grief or simply finding it hard, there are a number of organisations that can help. It is a good idea to speak with your GP or someone who can help you get the care you need.
We have included a list of local and national support organisations used to supporting people in bereavement. Support is available, if you don’t find the support that suits you, keep asking and looking.
The Spiritual Health team offer a Bereavement telephone line for families affected by grief and who would like to talk through it with someone. You can call and leave a message on 01603 287073 any time and the Spiritual Health team will call you back between 9.00am and 5.00pm.
Talking to children about death and grief
Include them as much as you can, tell them as much as you can, reassure them as much as you can. Evidence tells us that the best support a child can get in grief is seeing the adults around them grieving.
Like adults, they too find it hard to understand and cope if they are not told what is happening. When information is kept from children, sometimes their imagination can make the situation far more frightening as they seek to make sense of what is happening around them. It can lead to them feeling isolated and excluded.
• Use simple language when talking with them.
• Give them time and the opportunity to ask questions.
• Give them plenty of love and reassurance.
• Share your own emotions, this helps children to learn that it is okay and healthy to express emotions.
• Give children the space and opportunity to draw, write stories, and express themselves as they wish in order to say goodbye to the person who has died.
• Offer children the opportunity to participate in the funeral if they wish to, and you feel comfortable with that. It is a good idea to speak to the school or college that your child attends so that they can also offer support. Talk to your child about this.
• Finally, if you are worried, that’s the time to seek help. Arrange an appointment and talk through your concerns with your GP.
The Hospital Chapel & Spiritual Health Team
The Hospital Chapel, situated on Level 1, Centre Block, is always open for patients, relatives and staff. It is a peaceful place where you can sit quietly, think and relax away from the ward. Some find it helpful to pray or light a candle or to place a name on our prayer board. The space is open to everyone whatever their faith or belief. It is a non-denominational, multi faith facility and welcomes those of all faiths or none.
The Hospital Chaplains are available every day from 8.00am until 6.00pm and are on call during the night if there is an emergency. They are there to listen to patients or their families and to offer comfort. You do not have to have a religious faith to call upon a chaplain. They also have a list of leaders from many different faiths who are willing to come to the hospital.
The hospital recognises that spiritual care is significant especially at times of bereavement, so please do ask for a chaplain if you wish.
The chaplaincy contact details are provided at the rear of this booklet alongside other useful numbers and websites.
Organ and Tissue Donation
Most people are aware that hundreds of lives are saved every year by donated organs, such as hearts and kidneys. They may not realise that donated tissues such as eyes (corneas), skin, bone, tendons or heart valves can dramatically improve the quality of life for others and may even save lives.
Anyone can be considered as a tissue donor and a specialist from the hospital may contact you. Corneal donation must take place within 24 hours following death. The decision of donation is a very personal one and we must stress, it is only an option, it is not expected of you and your preference will be respected either way. A family member may consent on behalf of the deceased, even if they were not previously registered as a donor or carried a donor card.
For further information contact The East Anglian Eye Bank team on 01603 288495 during office hours and via switchboard outside of those times.
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 relevant contact at the trust; the 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 Integrated Care Board (ICB) – please see below for more information.
Who orders a post-mortem or inquest?
In some cases, we refer deaths to the Coroner and in some cases the Coroner may then order a post-mortem to find out how the person died. Legally, a post-mortem 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 post-mortem 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 post-mortem 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 post-mortem 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 the section on ‘Independent information, advice and advocacy’). They can put you in touch with a specialist lawyer if appropriate.
Please note: 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 the section on independent information, advice and advocacy, which details a range of organisations. Other local organisations may also be able to help. Other organisations that may be of help:
• Integrated Care Board (ICB): Integrated Care Board’s pay for and monitor services provided by NHS Trusts. Complaints can be made to the relevant ICB instead of us, if you prefer. Please ask us for contact details of the relevant ICB or visit www.nhs.uk/nhs-services/find-your-local-integrated-careboard/
• Parliamentary and Health Service Ombudsman (PHSO): The PHSO make 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. www.ombudsman.org.uk - 0345 015 4033
• 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 please note that they do not investigate individual complaints. Visit: www.cqc.org.uk
• 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 though, those reports are not investigated or responded to. www.improvement.nhs.uk/resources/report-patientsafety-incident/
• NHS England – Specialised Services: Specialised services support people with a range of rare and complex conditions. They often involve treatments provided to patients with 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 regarding any specialised services commissioned in your area, please contact NHS England’s contact centre in the first instance. Email: england.contactus@nhs.net or telephone 0300 311 22 33
• 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 within the ‘Concerns about nurses or midwives’ section on their website: www.nmc.org.uk
• 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 will help you decide which organisation is best placed to help you. More information can be found within the ‘Concerns’ section at: www.gmc-uk.org
• Healthcare Safety Investigations Branch (HSIB): HSIB’s purpose is to improve safety through effective and independent investigations that don’t apportion blame or liability. HSIB’s investigations are for patient safety learning purposes. Anyone can share cases with HSIB for potential investigation (but an investigation is not guaranteed). www.hsib.org.uk
Information for families following a bereavement
The following information has also been provided by information for families following a bereavement – July 2018, with the support of families, Trusts and other stakeholders, www.england.nhs.uk/ wp-content/uploads/2018/08/information-for-families-following-abereavement.pdf
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 the trust, that people can access free of charge. 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.
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 (‘medical accidents’). 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. www.avma.org.uk - 0845 123 2352
• Advocacy after Fatal Domestic Abuse: Specialises in guiding families through inquiries including domestic homicide reviews and mental health reviews, and assists with and represent on inquests, Independent Police Complaints Commission (IPCC) inquiries and other reviews. www.aafda.org.uk - 07768 386 922
• 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. www.childbereavementuk.org - 0800 02 888 40
• 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 and uses a translation service to support those for whom English is not a first language. Volunteers who staff the helpline are all bereaved parents, although supported and trained by professionals. www.childdeathhelpline.org.uk0800 282 986/0808 800 6017
• Cruse Bereavement Care: Offers free confidential support for adults and children when someone dies, by telephone, email or face-to-face. www.cruse.org.uk - 0808 808 1677
• Hundred Families: Offers support, information and practical advice for families bereaved by people with mental health problems, including information on health service investigations. www.hundredfamilies.org
• 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’. www.inquest.org.uk020 726 3111 option 1
• National Survivor User Network: Is developing a network of mental health service users and survivors to strengthen user voice and campaign for improvements. It also has a useful page of links to user groups and organisations that offer counselling and support. www.nsun.org.uk
• Patients Association: Provides advice, support and guidance to family members with a national helpline providing specialist information, advice and signposting. This does not include medical or legal advice. It can also help you make a complaint to the CQC. www.patients-association.org.uk - 020 8423 8999
• Respond: Supports people with learning disabilities and their families and supporters to lessen the effect of trauma and abuse, through psychotherapy, advocacy and campaigning. www.respond.org
• Sands: Supports those affected by the death of a baby before, during or shortly after birth. There is a bereavement support helpline, a network of support groups, an online forum and message board. www.sands.org.uk – 0808 164 3332
• Support after Suicide Partnership: Provides helpful resources for those bereaved by suicide and signposting to local support groups and organisations. www.supportaftersuicide.org.uk/
• South East Advocacy Projects: Provides a range of general advocacy services across the south of England. www.seap.org.uk
• 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. www.swanadvocacy.org.uk
• POhWER: Offers general advocacy services in the south and midlands and independent health complaints advocacy to support people to complain about NHS services in Suffolk. www.pohwer.net
• VoiceAbility: Provides NHS complaints advocacy giving telephone/advocacy 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. www.nhscomplaintsadvocacy.org telephone number: 0300 330 5454.
Future updates to this information
Please note that this information will be updated in the future as a result of expected new guidance and processes. These include:
• The outcome of the consultation on the Serious Incident Framework.
• The implementation and development of the role of the Medical Examiner including scrutiny of all deaths.
• Guidance on Child Death Reviews.
• The ambition in the original CQC report ‘Learning from Deaths’ to include all providers of NHS commissioned care, including primary care.
• Further policy developments that may be of relevance.
The Royal College of Pathologists www.rcpath.org/discover-pathology/what-is-pathology/ information-about-post-mortems-for-friends-and-relatives-/whathappens-during-a-post-mortem.html
Directgov (Coroners, post-mortems and inquests) www.direct.gov.uk/en/Governmentcitizensandrights/Death/ WhatToDoAfterADeath/DG_066713
Norfolk Coroner’s Service www.norfolk.gov.uk/births-ceremonies-and-deaths/deaths/theCoroner
Norfolk and Norwich University NHS Foundation Trust Bereavement Office https://www.nnuh.nhs.uk/patients-visitors/help-support/patientservices/bereavement-office/post-mortem-examination/
Norfolk County Council offer support via their website (bereavement support). This information can be made available in alternative formats, such as easy read or large print.
Further Advice
We hope that this pack has been useful to you during the first few difficult days following your bereavement. If you have any further queries, or in need of any further advice, please do not hesitate to contact the Bereavement Office or Mortuary at the Norfolk & Norwich University Hospital.
If at a later date, you feel that you would like to comment upon any of our services provided by the Trust, please use the feedback form enclosed in this pack or write to:
Chief Executive
Norfolk & Norwich University Hospital NHS Foundation Trust
Colney Lane
Norwich NR4 7UY
Acknowledgement and Thanks
The NHS is very grateful to everyone who has contributed to the development of this information. 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/LfDinvolvingfamilies
We aim to provide the best care for every patient. So, we would like your feedback on the quality of the care you have received from the Hospital. Please visit: ratenhs.uk/IQu9vx
The Hospital would like to thank RNS Publications for publishing this information and the following pages contain some features from services o ering their help at this time.
Whilst the Hospital is grateful of their support it does not endorse or recommend any of the services that they provide.
STOPPING JUNK MAIL
It is distressing to deal with a bereavement and unsolicited mail can be insensitive and destructive during a grieving process.
By scanning the below QR code on your phone or visiting www.stopmail.co.uk, we are able to securely share this information with mailing organisations and under the Data Protection Act the information will not be used for any other purpose.
Other benefits reduce the possibility of identity fraud, such as assumed identity and you will only have to supply the information once.
You may need help, support or advice on what to do when someone dies in relation to probate.
We offer free guidance and advice on the legal and financial aspects of bereavement including your responsibilities and whether probate is required. Calls are free from most land lines, some calls may be monitored for training purposes and all calls are confidential. This service is provided by the Bereavement
