An information guide on what to do after someone has died in hospital
We offer our condolences to you at this time.
We understand that you may have important personal and cultural requests about the care of your loved one. Please let a member of staff know and we will do our best to help in any way that we can.
This may seem like a lot of information, but please take time and share it with a trusted family member or friend.
Overview of steps you will need to take
- NBT (North Bristol NHS Trust) Patient Affairs officers will contact you on the phone the next working day following the death of your loved one.
- Contact funeral director and start to make funeral arrangements.
- Register the death.
- Finalise funeral arrangements with the funeral director.
Next of kin or another person acting for the deceased
The Patient Affairs team will contact the person listed as next of kin in hospital records to manage matters after the death. This person may or may not be a relative, depending on who the deceased chose. If no one was named, the closest relative or another responsible person will usually take on this role.
At this difficult time, it’s helpful for the next of kin to keep family and close friends informed. Please read the section below titled ‘Who can register a death?’ for more details.
What you will need to do first
Following the death of your loved one, you should receive a telephone call from the Patient Affairs team between 09:00 and 16:00 on the next working day. The Patient Affairs team will take some details from you, tell you what to do next and answer any questions you may have.
If you have a query, you can contact the Patient Affairs Office at Southmead Hospital on 0117 414 0184, Monday to Friday, 08:00 – 16:00.
Please note that the office is not open Saturdays, Sundays, or on Bank Holidays.
The Patient Affairs Office is located in the Sanctuary, Level 1, Gate 30 of the Brunel Building, Southmead Hospital.
Medical Certificate of Cause of Death (MCCD)
The Medical Certificate of Cause of Death (MCCD) is a legal document that shows the cause of death. It must be signed by the hospital doctor who cared for your loved one and by an independent Medical Examiner. It can take a few days before it is ready.
In some cases, the doctor or Medical Examiner may need to contact the Coroner’s Office, which may delay the paperwork further.
Role of the Medical Examiner Service
The Medical Examiner Service is an independent service that is a legal requirement in England and Wales. It reviews all deaths that are not investigated by a coroner, offering an independent check of the cause of death.
The Medical Examiner Service aims to:
- Increase understanding and peace of mind for families.
- Make sure that causes of death are accurate.
- Make sure that appropriate deaths are sent to HM Coroner for investigation.
- Improve learning and patient safety in hospital by providing a review of care.
Medical Examiners (MEs) are independent senior medical doctors who will not have been involved at all in the care of your loved one.
They carefully review the clinical notes and meet with the doctor who cared for your loved one. They discuss the person’s care and the cause of death, before the doctor completes the MCCD.
MEs work with a team of Medical Examiner Officers (MEOs), who are specially trained in the legal and medical elements of death certification.
A Medical Examiner or Medical Examiner Officer will call you in the next few days. They will explain the wording on the MCCD and answer any questions you have. They will also advise you how to get the death certificate and other forms from the Register Office.
The Medical Examiner Office can share any feedback to the clinical team or hospital and may ask them to review the care given. This helps identify ways to improve patient care in the future.
The Medical Examiner Office will do their best to contact the deceased’s next of kin. If you have any questions and have not been able to speak with the team, please contact the Patient Affairs team.
For more information on the Medical Examiner Service, please visit The Medical Examiner Service - BNSSG Healthier Together
Once completed, the MCCD will be delivered to the Bristol Register Office from the Medical Examiner Office by email (you do not need to collect it in person).
What do I do next?
Once you have spoken to the Medical Examiner Office team, you can usually register the death.
You will need to make a phone appointment to register the death with the Bristol Register Office (0117 922 2800) or complete an online form through the Bristol City Council Website: Register a death
You should not make a Register Office appointment until you have spoken to the Medical Examiner Office team.
The coroner
Sometimes, the hospital doctor must report a death to the coroner before an MCCD is issued. They are a legal expert that must investigate certain types of deaths:
- Deaths where the cause is unknown.
- Deaths involving violence or trauma.
- Deaths caused by industrial diseases.
- Deaths from acute alcohol poisoning or drug related illnesses.
- Any other deaths thought to be unnatural.
The Coroner’s Office will gather information from the medical staff and the Medical Examiner. Then they will decide if a post-mortem and/or coroner’s inquest is needed.
In many cases they will give permission to issue the MCCD.
Coroner’s post-mortem
A post-mortem (sometimes called an autopsy) is an examination of a body after death. If the death has been referred to the coroner, the MCCD cannot be released or the death registered until this is complete.
The post-mortem usually takes place within a short time of the death, at the coroner’s mortuary in Flax Bourton.
The Coroner’s Office will take over from the Patient Affairs Office and Medical Examiner Office. They will keep you informed of what is happening and guide you in the next steps that you should take.
The coroner does not require the consent of any other person for this to take place. Funeral directors are familiar with post-mortems and are usually happy to go ahead with funeral arrangements.
The Coroner’s Office will tell you when they have sent paperwork to the Register Office. You can then make an appointment to register the death.
The Coroner’s Office can be contacted on 01275 461 920. Opening hours: 07.30 - 15.30, Monday to Friday.
Coroner’s inquest
In some circumstances the coroner will proceed to open an inquest.
The purpose of an inquest is to find out four facts.
- Who the deceased was.
- When they died.
- Where they died.
- How they died.
The coroner’s inquest will include:
- Recording the medical cause of death.
- Completing a post-mortem, in some cases
- Asking you to provide a statement about your loved one, in some cases,
- Asking the team who cared for the deceased to provide statements.
The coroner will consider this evidence, and there may be a hearing. This is a fact-finding hearing, not to place blame, but to answer the four questions above. You can attend the inquest hearing and ask questions.
The coroner will then record a conclusion, such as accident or suicide. The process can take many months to complete, but this does not mean you cannot have a funeral or celebration before it is finished. You will be kept up to date by the Coroner’s Office.
Property
If your loved one had property or clothing left with the Patient Affairs team, they will contact you to arrange its return or disposal. Jewellery is usually left on the person and will go to the funeral director, unless the family ask for it to be removed. Please make sure you agree on what should happen with the Patient Affairs Office. Items not collected within 3 months will be disposed of.
How to arrange to view your loved one after death
You may wish to come to the hospital’s viewing room to see your loved one. The viewing room is a separate room within the hospital Mortuary.
To do this, you can make an appointment with the Mortuary Team by phoning 0117 414 0184 between 08:00 - 16:00, Monday to Friday. We do not currently offer viewings on evenings or weekends.
Alternatively, you may prefer to wait until the deceased is transferred to the care of the chosen funeral director.
On the rare occasions when the cause of death may be a criminal matter there will be restricted viewing. In these cases, the police will advise you.
Tissue donation
After someone has died it may be possible for their tissues to be donated to help others. Even if they were not a registered donor, the law in England presumes they give consent to donate their tissues. However, family or next of kin will always be consulted before this happens.
Tissues can only be donated in certain circumstances and time frames:
- Eyes for corneal transplantation can be donated up to 24 hours after death.
- Heart valves, bone, skin and other tissues can be donated up to 48 hours after death.
If you choose tissue donation, your loved one will be treated with care and respect, and their appearance will be restored. It won’t delay funeral plans.
A specialist nurse may contact you to explain the options and answer any questions. Tissue donation is completely voluntary. For more information, call NHS Blood and Transplant on 0800 432 0559 and leave your name and number. A nurse will call you back soon.
Registering a death
Once the Medical Certificate of Cause of Death has been issued and emailed to the registrar, you will need an appointment to register the death with the Bristol City Council Register Office.
The whole process will be completed in person at the Register Office at Southmead Hospital or in central Bristol.
Who can register a death?
You can register the death if you are:
- A relative.
- Someone who was there at the death.
- An administrator from the hospital.
- The person making arrangements with the funeral directors.
You will need to tell the registrar:
- The person’s full name at the time of death.
- Any names previously used e.g., maiden name.
- The person’s date and place of birth.
- Their last address.
- Their occupation.
- The full name, date of birth and occupation of a surviving or late spouse or civil partner.
- Whether they were receiving a state pension or any other benefits.
Documents you will receive
When you register the death, you will receive the following:
- A legal death certificate. This is a certified copy in the register of deaths. There is an opportunity to purchase additional death certificates, and you will need to consider how many certificates are needed, as banks, private pension companies and insurance companies require certified copies. Each certificate costs £12.50.
- A Certificate for Burial or Cremation (the ‘green form’), which gives permission for burial or an application for cremation.
- A Certificate for the Department of Work and Pensions Benefit (form BD8) – you may need to fill this out and return it if the person was receiving a state pension of benefits.
Once you have registered the death you can inform your chosen funeral director that the death is registered so that arrangements can go ahead.
If the death has been referred to the coroner, you will not be able to register the death until the registrar has received a notification from the Coroner’s Office.
Organisations you need to contact
Tell Us Once
You will need to inform various organisations and government departments about the death. Bristol City Council runs a service called Tell Us Once to help with this. This saves you having to buy extra death certificates for each organisation they contact.
To use it, let the registrar know when you register the death. They’ll explain your options and guide you through the process. You can access the service by phone or online after registration. If you don’t use Tell Us Once, you’ll need to contact each organisation yourself.
You may need to notify the following organisations
Local councils
- Housing Benefit Office
- Council Tax
- Collection of payment for council services
- Libraries
- Electoral Services
- Blue Badges
- Adult Services
- Children’s Services
- Council Housing
Department for Work and Pensions (DWP)
- Pension, Disability and Carers’ Service.
- Jobcentre Plus
- Overseas Health Team
Revenue and Customs
- Child Benefit
- Child Tax Credit and Working Tax Credit
- Personal Taxation
Identity and Passport Service
- Driver and Vehicle Licensing Agency
- Ministry of Defence
- Service Personnel and Veterans Agency
- War Pensions Scheme
People you might need to inform
Please ask a member of staff for a printed copy of this patient leaflet if you would like a checklist to complete.
- Family
- Friends
- Healthcare providers, such as optician, dentist, GP
- Bank or building society, credit card providers
- Premium bonds, long term savings companies (ISAs)
- Anyone holding money for the deceased
- Social Services such as home help or care
- Previous/current place of work (occupational pension), trade unions
- Executor of the estate (will)
- Insurance Companies (car, home, life insurance)
- Residential or nursing home
- Landlord or housing agency
- Mortgage company
- Utility companies (water, electric, gas, phone, internet, TV licence, Internet)
- Hire purchase companies
- Post Office (to redirect mail)
- Cancellation of any upcoming payments
- Transport (to day centres or clubs)
- Deliveries (milk, food boxes, newspapers)
- Return of any borrowed equipment (medical or social)
- Religious organisations (faith leaders)
- Stop any junk mail
Further information and bereavement support
The time ahead may be a very difficult one for you. If you have any further questions, a member of the chaplaincy team (0117 414 3700) or your GP would be happy to help.
If you would like to discuss any aspect of your loved one’s care, please contact the ward to arrange an appointment with a member of the medical/nursing team.
Useful websites
How to contact us
Patient Affairs Office
© North Bristol NHS Trust. This edition published October 2025. Review due October 2028. NBT002506
Trust Board Meetings 2022/2023
Now that Infection Prevention & Control guidelines have been relaxed in line with the Government’s “Living with Covid-19” guidance, members of the public and staff are able to attend our Trust Board meetings in public. If you would like to attend, please let us know by emailing trust.secretary@nbt.nhs.uk and we can provide details of the location, and print papers if required. If you wish to ask a question of Trust Board, please submit it in writing follow the process set out here.
The Trust Board meets in public at 10am.
- Thursday 26 May 2022
- Thursday 28 July 2022
- Thursday 29 September 2022
- Thursday 24 November 2022
- Thursday 26 January 2023
- Thursday 30 March 2023
We will continue to record each Trust Board meeting that is held in public, and the recording will be available for viewing for two months following the meeting until the next meeting’s recording is uploaded.
Download Integrated Performance Reports (IPR):
Download Meeting Papers:
Respiratory Current Research
With over 15 years of commercial and non-commercial research, the Respiratory Research team led by Professor Maskell is one of the largest and most successful clinical and academic pleural research teams in the UK.
For nearly a decade they have been designing and delivering practice-changing clinic trials, improving the lives of patients with mesothelioma, pleural infection, and pneumothorax.
They have tested new devices designed to manage recurrent pleural effusions and pneumothorax, including a first in human trial which led to an international multi-centre randomised controlled trial (SEAL-MPE trial).
The multidisciplinary team includes highly skilled and motivated research nurses, managers, clinical research fellows and clinical academics. The team has also successfully been awarded research grants of more than £5million.
Please speak to the person treating you to find out if there is a research study that may be able to help you.
Current Studies:
Asthma - coming soon
If you need to use a Preventer Inhaler to manage your Asthma, we will soon be able to offer you the opportunity to take part in one of our new research trials.
To learn more, please email: respiratoryresearch@nbt.nhs.uk or call: 0117 4148114
If you get in touch with us, we will ask a few basic questions regarding your asthma history and smoking status.
CONTENTed study: Characterisation Of Neuroimaging and wellbeing over Time in severe EosiNophilic asthma Treated with mepolizumab.
There is a high prevalence of anxiety, depression and neurocognitive dysfunction which impacts on the wellbeing of patients with severe asthma. These factors may be the result of poorly controlled asthma, the effects of asthma treatments, but also themselves impact on asthma severity. The relationship between these factors is not well understood.
Magnetic resonance imaging (MRI) of the brain demonstrates structural and functional differences between the brains of people with asthma and those without. Though not extensively studied, a small number group of trials have shown a 'normalisation' of brain activity after cognitive behavioural therapy in patients with asthma and depression. The effect of asthma treatments on brain structure and activity requires further investigation.
Mepolizumab is amongst a group of injectable treatments that have revolutionised the treatment of poorly controlled severe eosinophilic asthma. Randomised controlled trial and real-world data shows reduced exacerbations and oral corticosteroid use in patients taking mepolizumab. Trials also show improved asthma-specific quality of life, though there have not been studies that have assessed anxiety, depression, well-being and cognition in detail.
In this observational study we propose to examine the MRI structure and function of the brains of people with severe eosinophilic asthma before and six months after starting mepolizumab as part of routine clinical practice. We will collect detailed health and neurocognitive information to evaluate changes in psychological health and cognition with mepolizumab. We will compare these data, to results in patients with well-controlled asthma. We will assess whether changes seen on MRI brain imaging relate to the direct effect of the mepolizumab on the brain, or of the secondary effects of improved asthma control that is known to be achieved by mepolizumab.
To become participate in this study, find out more information here.
Project Details
Principal Investigator: James Dodd
Planned End Date: TBC
Local Ref: 5409
UK Lung Volume Reduction: Multi-centre Observational Study
Many people with chronic obstructive pulmonary disease (COPD) remain very breathless and limited. In some patients, with the appropriate pattern of emphysema, an operation called lung volume reduction surgery is effective at removing the worst affected area of lung. New techniques have been developed where emphysema can be treated using a fibre-optic camera called a bronchoscope. Trials have shown that using a bronchoscope to place endobronchial valves into the airways can be very effective in carefully selected patients and the technique is now being adopted in hospitals across the UK.
This study will collect data from people undergoing these procedures at hospitals across the UK to evaluate how well they work in practice and what factors at baseline influence response. Baseline, three month and 12 month follow up data will be collected. This will include lung function data, measures of exercise capacity, questionnaires about health status and CT scan results. Questions addressed will include:
- What lung function improvement is seen in clinical practice?
- What factors determine who is most likely to respond?
- How safe are the procedures and what is the rate of complications?
- What proportion of people undergoing bronchoscopic procedures require repeat procedures or surgery subsequently?
- Does long term survival differ between people undergoing the different treatments?
The study is supported by The British Lung Foundation and sponsored by Imperial College, London. By building collaboration, the establishment of the network will also produce a structure that will make evaluation of future bronchoscopic techniques easier bringing innovative treatments into play more quickly.
Project Details
Principal Investigator: Dr James Dodd
Planned End Date: 30/06/2026
Local Ref: 4076
Pleural Antibiotic Concentrations Informing Treatment (PACT) Study
When people get chest infections, fluid can sometimes build up around the lung. This is called a parapneumonic pleural effusion. In about 1 in 10 cases, the fluid itself becomes infected, this is called pleural infection. Pleural infection is usually treated by removing the infected fluid and using antibiotics to mop up the left-over infection.
Patients with pleural infection often receive long courses of intravenous antibiotics because doctors are uncertain of how well antibiotics reach the infected pleural fluid and whether bacteria are becoming resistant to them.
The Pleural Antibiotic Concentrations informing Treatment (PACT) study is observational and aims to see how well antibiotics are reaching the infected fluid, and how quickly the bacteria are being killed. To answer this, we will collect samples of pleural fluid from participants who are being treated for pleural infection with pleural drainage. This fluid will be tested to measure how much antibiotic has managed to get into it. We can then tell if the antibiotics are reaching high enough concentrations to kill bacteria. We will also be testing this fluid to see if the bacteria are being killed by the antibiotic or not. In the future, this information may shorten the time patients are treated with intravenous antibiotics and therefore how long they need to stay in hospital.
Project Details
Local Ref: 4581
TARGET: Reducing repeat pleural biopsies in suspected cancer
Background and study aims
Pleural mesothelioma is a cancer that affects the lung lining, caused by asbestos. Despite recent treatment advances, the prognosis is often poor. Prompt diagnosis is vital. A biopsy can diagnose mesothelioma, guide treatment and support compensation claims. However, some people need multiple biopsies, increasing the risk of biopsy-related complications and prolonging the time to diagnosis. Doing additional tests on initial biopsies may increase the chance of diagnosing mesothelioma and avoid repeat biopsies. This would allow anti-cancer treatment to be started sooner and improve survival. The extra tests are not genetic but look for genetic changes in the cancer that allow it to grow and spread. The genetic markers in mesothelioma are called BAP1, p16 and MTAP. If they have disappeared on biopsy mesothelioma is diagnosed. Another study was previously conducted on people with suspected mesothelioma who required further biopsies as their first biopsy did not give a diagnosis It took place in eight UK centres and recruited 59 patients. This study aims to perform these additional tests on their biopsy samples to see whether this would have made the diagnosis sooner and removed the need for further biopsies. It will investigate how many biopsies could have been avoided, how much time would have been saved, how this may have impacted survival and what cost-savings this would have offered the NHS.
Who can participate?
This study includes the 59 participants in the original TARGET study who were recruited between September 2015 and September 2018. No additional participants will be recruited. Should any participants of the original TARGET trial wish to opt-out, they can contact the main contact below.
What does the study involve?
Biopsy samples taken as part of the participants’ routine clinical care will be tested for the markers of genetic change in mesothelioma (BAP1, MTAP and p16). The ability to make a diagnosis using these tests will be compared with the original diagnostic pathway, which was before the use of these tests.
What are the possible benefits and risks of participating?
The benefits of enrolling are to future patients, whose diagnostic process could be improved, with no additional requirements of TARGET participants. As there are no additional interventions required of participants and this will not impact management, there are no risks identified.
Project Details
Principal Investigator: Prof Nick A Maskell
Duration: October 2022 - July 2025
Funded by the Southmead Hospital Charity
Main contact : Geraldine.lynch@nbt.nhs.uk
The effectiveness and risks of Treating people with Idiopathic Pulmonary fibrosis with the Addition of Lansoprazole (TIPAL)
IPF is a progressive scarring lung condition causing coughing and breathlessness. IPF patients often have reflux disease meaning stomach acid may be breathed into the lungs, potentially damaging them. Medicines which stop stomach acid production, proton pump inhibitors (PPIs), can be used to reduce reflux symptoms including heartburn. Some researchers suggest PPIs also reduce IPF progression.
This research aims to see if IPF progresses slower if treated with PPIs. Based on the results, we will be able to recommend whether or not IPF patients should take PPIs.
This trial will involve 298 IPF patients from approximately 37 UK hospitals. At the beginning of the study, we will ask patients to perform breathing tests, and ask those with a cough to use a device to count the number of times they cough in 24hours. We will ask them to answer two questions rating their coughing and breathlessness, and complete questionnaires on their coughing, IPF, sleep habits and general condition. People will be given a PPI, called lansoprazole, or dummy tablets, twice per day for 12 months. They will be given a leaflet telling them what to do about reflux symptoms. At the end of the study, we will repeat these tests and analyse the results. We will record any side effects people may get. If people suffer side effects, they can reduce the dose.
People taking medicines that interact with PPIs or have other serious medical conditions won’t be able to participate. People receiving PPIs will only be able to participate if they can stop taking their medication without their heartburn returning.
The study will be undertaken by doctors and researchers with experience of IPF, reflux disease, PPIs and coughing. We will publicise our results by writing reports for medical publications, media articles and social media.
Project Details
Local Ref: 4672
Take Part in Research
Become one of the thousands of people taking part in research every day within the NHS.
About Research & Development
Find out more about our research and how we're working to improve patient care.
Contact Research
Research & Development
North Bristol NHS Trust
Level 3, Learning & Research building
Southmead Hospital
Westbury-on-Trym
Bristol, BS10 5NB
Telephone: 0117 4149330
Email: research@nbt.nhs.uk
FAST MRI Research Programme
The FAST MRI research programme has been designed to find the most aggressive form of breast cancers sooner.
Early breast cancer detection and diagnosis saves lives. The NHS Breast Screening Programme offers women aged 50-70 years a mammogram every 3 years. By detecting breast cancers before they can be seen or felt, breast screening already saves about 1,300 lives each year in the UK. MRI scans can detect some aggressive breast cancers even earlier than mammograms.
Unfortunately, MRI scans are expensive, and so the NHS uses them only to screen women at a high risk of developing breast cancer. New evidence suggests that MRI scans can be abbreviated to reduce their cost to the NHS, without affecting their ability to accurately display breast cancers.
FAST MRI is an abbreviated form of MRI which takes less time to acquire (3 vs 20 mins on the scanner) and to interpret (1 vs 10 mins). Unlike mammograms, FAST MRI scans can identify aggressive cancers irrespective of breast density – a trait found more commonly in younger women. Therefore, we are developing FAST MRI for women who are having their first screening by the NHS Breast Screening Programme. We wish to find out if FAST MRI could find aggressive cancers even earlier and smaller for these women because early detection of breast cancer saves lives.
Sign up here to have FAST MRI Programme updates and find out about opportunities to be involved Staying connected with FAST MRI at North Bristol NHS Trust
FAST MRI Studies:
FAST MRI DYAMOND
Interested in taking part? To read the patient Information about FAST MRI Dyamond please go to the FASTMRI Dyamond webpage.
(Diagnostic Yield study for Average MammOgraphic screeNing Density): A multicentre study offering women a FAST MRI scan in addition to their screening mammogram, to see if FAST MRI can find cancers missed by mammography
Aim:
To see if FAST MRI, a new imaging test, can detect cancers that have been missed by mammograms for women with average breast density at their first screening mammogram (age 50-52).
Background:
Finding breast cancers early saves lives. The NHS breast screening programme uses mammograms tofind breast cancers early but sometimes a mammogram misses a cancer which keeps growing until the woman finds it herself. MRI (Magnetic Resonance Imaging) detects aggressive cancers better than mammograms but is expensive and the NHS uses it to screen only women at very high risk. FAST MRI is a shorter MRI test which might benefit more women by finding more breast cancers earlier and saving more lives.
Every woman’s breasts are different. Breast composition affects how they look on mammograms. Women with denser breasts are more likely to have their cancers missed on mammograms because dense breast tissue can hide a cancer. Of four density categories (A,B,C and D), A is the least dense and D is the densest. At age 50-52, about 8 of 10 women will be in one of the middle categories, B or C, about half in each. We already know from previous research that FAST MRI can find cancers missed by mammograms in women with denser breasts (C and D). But women with average breast density (B) also have cancers missed, because mammograms are better at finding some types of cancer than others. We want to find out if FAST MRI can detect additional cancers for this group of women (category B). Women in category A are least likely to benefit as their mammograms show any cancers present more clearly and easily.
Design and methods used:
We will invite women aged 50-52, the age when women at average risk of breast cancer are first invited for an NHS screening mammogram. We will use computer software to measure women’s breast density from their mammogram and invite women with breast density in category B and a normal mammogram result to have a FAST MRI scan. 1,000 women will be scanned at 4 NHS sites, chosen for the ethnic diversity of the screened population and the experience the site has in working with FAST MRI. This choice of NHS sites will ensure our sample is representative of the UK. NHS professionals who have completed FAST MRI reader training will interpret the FAST MRI scans. We will count the total number of cancers detected by FAST MRI and record the types, aggressiveness and size of cancer found. We will count how many women need further tests but turn out not have cancer. We will ask women to share with us their experience of having a FAST MRI. The results will help us decide which women should be included in a future FAST MRI trial to measure if FAST MRI is clinically and cost effective for the NHS by finding breast cancers earlier and saving lives.
Patient and public involvement (PPI):
Patients and the public are integral in our work and we have ongoing support from:
- Breast Cancer Unit Support Trust (BUST)
- National Cancer Research Institute (NCRI) Breast Group
- Independent Cancer Patients’ Voice (ICPV)
Our two lay research team members with personal experience of breast cancer and of breast screening will work with the wider PPI group to write public-facing documents so that participants and the public understand the research. They will also work to increase diversity, equality and inclusion in the PPI group.
Dissemination:
We will publish the results in academic journals and present at international meetings. Our PPI network will help us to share the results with charities and support groups locally and nationally.
Funded by the NIHR and MRC via the EME funding stream (NIHR 150502).
Project Details
Chief Investigator: Dr Lyn Jones
Co-Lead: Dr Rebecca Geach
Planned End Date: 01/11/2026
Local Ref: 5273
OPERA
(OPtimisation of the FAST MRI protocol: an Evaluation of what makes a good breast MRI through detailed Analysis of scans from multiple NHS sites)
Background:
Finding breast cancer early saves lives. The NHS Breast Screening Programme (NHSBSP) uses mammograms to detect early breast cancers. However, not all cancers show on a mammogram so a cancer can be missed and continue to grow until the woman finds it herself. Magnetic Resonance Imaging (MRI) scans are better at detecting cancers than mammograms. However, MRI is expensive, and the NHS only uses it to screen women classed as high risk of developing breast cancer.
Recent studies have shown that using only part of the full breast MRI scan detects cancer equally well as the full scan, but is a much quicker scan with lower costs. This technique is called FAST MRI and has the potential to save more women’s lives by finding breast cancers earlier than a mammogram and providing value for money for the NHS. A group of research studies led by North Bristol NHS Trust aim to develop a better breast screening programme using FAST MRI for women who currently have mammograms, to screen for breast cancer.
How easy it is to see a breast cancer on an MRI scan depends on the scan quality and the technical details of the scan, known as the protocol. Quality control is therefore crucial for breast screening to optimise the detection of cancers.
This pilot study will develop a standardised and optimised protocol to be used in a separate multicentre trial of FAST MRI for women having their first screening mammogram (DYAMOND).
Aims:
- Define the parameters that make a good quality FAST MRI scan.
- Standardise the scan protocol across NHS sites to enable quality control during FAST MRI research trials and future clinical practice.
Design and Methods:
Our study will analyse breast MRI scans from different scanners across NHS sites within the FAST MRI Research Programme. Anonymised scans will be sent electronically to a panel of Breast Radiologists who will each score the scans for multiple aspects of scan quality. A team of Medical Physicists will also extract the numerically measurable aspects within each of the sites’ scan protocol and images. These two information sets, radiologists’ visual assessments and objectively measured values, will then be analysed to discover which settings make the optimal FAST MRI scan for each type of MRI scanner used. Site specific recommendations will be made to improve scan quality.
Results:
Study in progress.
Funded by Southmead Hospital Charity Research Fund.
Project Details
Principal Investigator: Dr Katherine Klimczak
Planned End Date: 31/12/2024
Local Ref: 5268
ENAID
(EvaluatioN of an Artificial Intelligence (AI) Tool developed within and owned by the NHS to accurately measure mammographic breast Density): Selection for personalised screening with FAST MRI.
Background:
Finding breast cancer early saves lives. The NHS uses mammograms to try and detect early breast cancers. However, as mammograms do not show some cancers very well, a cancer can be missed and continue to grow until the woman finds it for herself. MRI (Magnetic Resonance Imaging) is a test that can find cancers better than mammograms, but it is expensive and so the NHS only uses it to screen women at very high risk of breast cancer. A quicker, shorter MRI test is now available called FAST MRI. Not only might this test benefit more women, it may also provide better value for money for the NHS to find breast cancers early and save lives.
Every woman’s breasts are different. One way they differ is in a characteristic known as mammographic or breast density, which affects how they look on mammograms. Women with denser breasts can have their cancers missed on mammograms, as the dense normal tissue can hide the cancer. FAST MRI is better at finding these cancers.
To find out which women have dense breasts and could benefit from a FAST MRI, the mammograms need to be studied and measured. Currently, breast density is looked at and estimated by the radiologist but as each radiologist might view images slightly differently, results for breast density might not always be correct. There are now better systems to do this using (expensive) technology.
Aims:
To evaluate the accuracy and reliability of a breast density measurement tool. This will provide the National Breast Screening Programme (NHSBSP) with the ability to describe a woman’s breast density. If this tool is successful, it will further enable the North Bristol NHS Trust led FAST MRI research programme to develop a better breast screening programme.
Methods:
Our study uses an NHS developed and owned artificial intelligence (AI) software tool to automatically categorise the breast density. The cost to other NHS organisations will therefore be much lower when compared to commercial software. In this study we have tested our tool on anonymised mammograms, held in a research database called OPTIMAM, and compared the results to measurements made by commercial technology.
Our study looked at women aged 50-55, the age when women at average risk of breast cancer in the population are first invited to attend for an NHS screening mammogram.
Results:
The results of this study will be presented at the Symposium Mammographicum Conference, June 2023
Funded by Southmead Hospital Charity Research Fund.
Project Details
Principal Investigator: Dr Katherine Klimczak
Planned End Date: 01/04/2023
Local Ref: 5086
Mapping the learning curve of novice FAST MRI readers
A study to improve FAST MRI interpretation training and to enhance Breast Clinician and Advanced Practitioner Radiographer understanding of breast MRI at multidisciplinary team (MDT) discussions.
Background:
FAST MRI (a shortened form of breast MRI) has been developed to address limitations of full protocol breast MRI (fpMRI), by shortening the time needed to acquire and to report the scan. FAST MRI diagnostic accuracy is similar to fpMRI and therefore has potential for wider use in screening but to roll it out on a larger scale more readers skilled at interpreting FAST MRI would be needed. Initial evaluation showed NHSBSP mammogram readers could be trained to interpret FAST MRI with a single day of structured training, but novice MRI readers were still learning at the end of the final assessment task and therefore it is likely that further training could further improve their performance. The current study aims to see if further training can enable novice MRI readers to match the performance of experienced breast MRI readers at FAST MRI interpretation. The improvement in novice reader performance during the training will be monitored to enable evaluation of their "learning curve” so that we can find out how much training mammogram readers need to enable them to interpret FAST MRI scans in clinical practice.
Methods:
Mammogram readers from seven NHS sites in England will undertake the developed North Bristol FAST MRI interpretation training programme. The final assessment task of the training programme has been updated for this study (since its use in the previous Multi Centre Reader Training Study) so that feedback (the true results of each FAST MRI scan) is given to the readers immediately after they have recorded their opinion about the scan. This modification to the assessment task is known as "formative assessment” in educational theory and has been shown in education research to be an effective teaching tool. Because the FAST MRI scans of the final assessment task are presented to each reader in a different random order, we will be able to map the learning curve of each reader as they complete the final (formative) assessment task.
Results:
The results of this study will be presented at the Symposium Mammographicum Conference, June 2023
Funded through the National Breast Imaging Academy by Health Education England.
Project Details
Principal Investigator: Dr Liz O’Flynn
Planned End Date: 30/12/2022
Local Ref: 5041
Quality Assurance/Technical Development
Background:
To be able to get high quality FAST MRI images it is important that the correct protocol (information/sequences programmed into the scanner) is optimised. To do this test (phantom) breast need to be developed to trial the protocols to put into the MRI machine.
Aims:
To develop breast test objects to ensure an optimum FAST MRI protocol (the information put into the MRI scanner to run the scan) and develop a quality assurance (QA) programme that can be used across different sites and MR scanner vendors.
Methods:
This phantom development work includes the design and construction of 2 magnetic resonance imaging (MRI) test objects that will be used for quality assurance (QA) tests of MR scanners at centres participating in the FAST MRI project.
One of these test objects will be used to assess the dynamic range of the dynamic contrast enhanced (DCE) sequence and the other the resolution in 3 dimensions. The MRI test objects will be trialled at NBT initially in order to finalise the design.
Results:
The results of this study will be presented at the Symposium Mammographicum Conference, June 2023
Funded by the National Institute of Health Research (NIHR) Research for Patient Benefit funding stream.
Project Details
Principal Investigator: Dr Lyn Jones
Planned End Date: 30/10/2022
Local Ref: 4543
Reader Training Programme: Multi-Centre Study
Background:
After the promising results of the single centre study, the FAST MRI training programme was awarded an NIHR grant to expand and develop the FAST MRI training further.
Aims:
The aim of this study was to refine and pilot a training programme for FAST MRI interpretation within the NHS Breast Screening Programme (NHSBSP) workforce, to support the delivery of a future multicentre study of FAST MRI versus mammogram for breast cancer screening.
- Produce an electronic version of a standard teaching tool and data collection tool working in close partnership with NHS based SciCom team (Workstream 1).
- Pilot the standard teaching tool across six NHS sites within the South West region, UK and collect data on the accuracy and speed of FAST MRI interpretation following training (Workstream 2).
Methods:
The aim was achieved in two work streams:
- Workstream 1: Production of electronic versions of a standard teaching tool and of a data collection tool.
- Workstream 2: Pilot the standard teaching tool across six NHS sites (NHSBSP screening units) within the South West region of England (Truro, Plymouth, Taunton, Avon, Cheltenham and Swindon) and collect data on the accuracy and speed of FAST MRI interpretation following training. In addition, a Budget Impact Analysis to assess potential cost savings and affordability to the NHS to be assessed by the research team’s Health Economist as part of this workstream.
- Training: The teaching tool was used to train at least 12 readers from six centres to read FAST MRI. One day group training replaced the one-to-one training (used in the previous single centre study). This was made possible by the electronic teaching device.
- Follow-up interview: Study participants who gave consent to be contacted for future studies were invited to take part in a follow up interview to find out more information about how the readers felt about the study.
Results:
Conclusions:
- NHSBSP mammogram readers who completed the FAST MRI training programme achieved diagnostic performance at FAST MRI interpretation (in the final assessment task of the training programme) within international benchmarks (standards) published for full protocol breast MRI.
- The single day of training was not enough to enable mammogram readers who were new to breast MRI to interpret FAST MRI quite as well as mammogram readers who were experienced in full protocol breast MRI interpretation.
- Mammogram readers who were new to breast MRI interpretation continued to improve at how well they could detect breast cancers from FAST MRI scans during the final assessment task of the training programme. This showed that they were still learning during the final task and means that their diagnostic performance might improve further if given further training.
Funded by the National Institute of Health Research (NIHR) Research for Patient Benefit funding stream.
Project Details
Principal Investigator: Dr Lyn Jones
Study Completion: 07/09/2020
Local Ref: 4543
Reader Training Development: Single-Centre Study
Background:
Mammographic screening programmes result in both over diagnosis and under diagnosis of breast cancer. Under diagnosis leads to cancers presenting symptomatically between screening visits (interval cancers), and to cancers being detected by screening only once they have already reached more complex and life-threatening stages.Although MRI is the most sensitive method to detect breast cancer, currently only women classified as high risk (>30% lifetime risk) are offered screening MRI in the UK. However, in the future, personalised screening could enable larger numbers of women to be offered different screening regimes, each incorporating different imaging modalities, according to their level of risk.
Finding breast cancer early saves lives, and there is therefore a need to develop cost-effective imaging tests that will benefit women at risk of breast cancer by finding significant disease early. First post-contrast Acquisition SubtracTed (FAST) MRI is a type of abbreviated (shortened) breast MRI. FAST MRI is essentially as accurate at breast cancer detection as full protocol breast MRI, but is much faster to acquire and report. This technique might benefit more women than are currently offered screening with full protocol breast MRI. FAST MRI may be especially useful for women with dense breasts, since cancers obscured by dense tissue on mammograms are often visible on MRI
Aims:
The aim of this study was to explore whether NHS breast screening programme (NHSBSP) mammogram readers can learn to effectively interpret FAST MRI with less than one day’s additional training and to match the capabilities of expert breast MRI readers at this task in terms of accuracy and speed of interpretation.
Methods:
FAST MRI images were created by using previously acquired full protocol breast MRI scans. The anonymised images were reformatted and simplified into a form equivalent in its display to a FAST MRI. Using these FAST MRI images, training was offered to colleagues at Bristol Breast Care Centre.
Four consultant radiologists who were qualified to report full protocol breast MRI and four screening mammogram film readers who had not previously been trained to report MRI were trained to read FAST MRI. They were shown a set of training images with answers in a one to one session with the Chief Investigator, and the length of time taken to train each person was recorded.
Results:
The findings showed that the brief structured training carried out in the study enabled multi-professional mammogram readers to achieve similar accuracy at FAST MRI interpretation to that of the consultant radiologists experienced at breast MRI interpretation.
For more information about this study, published results can be found on the British Institute of Radiology website (main results), European Journal of Radiology website (training methodology) and the Pub Med website (review of published literature).
Funded by North Bristol NHS Trusts’ Research Capability Fund.
Project Details
Principal Investigator: Dr Lyn Jones
Study Completion: 26/02/2019
Local Ref: 4002
Further Info:
If you would like more information about the FAST MRI research programme, or would like to find out how you can get involved, please contact FASTMRI@nbt.nhs.uk.
You can also get to know the researchers and support staff delivering this study by visiting the FAST MRI Research Team page.
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FAST MRI Research Team
The FAST MRI Programme has been developed by a multidisciplinary team of collaborating clinicians, academics and members of the public across the UK, led by North Bristol NHS Trust. Together the FAST MRI team bring a wealth of experience in imaging, research, science and breast cancer screening and treatment.
Early breast cancer detection and diagnosis saves lives. The NHS Breast Screening Programme offers women aged 50-70 years a mammogram every 3 years. By detecting breast cancers before they can be seen or felt, breast screening already saves about 1,300 lives each year in the UK. MRI scans can detect some aggressive breast cancers even earlier than mammograms.
Unfortunately, MRI scans are expensive, and so the NHS uses them only to screen women at a high risk of developing breast cancer. New evidence suggests that MRI scans can be abbreviated to reduce their cost to the NHS, without affecting their ability to accurately display breast cancers.
FAST MRI is an abbreviated form of MRI which takes less time to acquire (3 vs 20 mins on the scanner) and to interpret (1 vs 10 mins). Unlike mammograms, FAST MRI scans can identify aggressive cancers irrespective of breast density – a trait found more commonly in younger women. Therefore, we are developing FAST MRI for women who are having their first screening by the NHS Breast Screening Programme. We wish to find out if FAST MRI could find aggressive cancers even earlier and smaller for these women because early detection of breast cancer saves lives.
Meet the team:
Dr Lyn Jones
Consultant Radiologist - FAST MRI Programme Lead
Dr Lyn Jones is a Consultant Radiologist specialising in Breast Care. Lyn was struck by the potential for FAST MRI to pick up aggressive breast cancers earlier for women, regardless of their mammographic density, and so she set up the FAST MRI Programme of Research at North Bristol NHS Trust. She became Chief Investigator for local and National Institute for Health and Care Research (NIHR), Research for Patient Benefit (RfPB) grants, designing and testing a training programme for NHS Breast Screening Programme (NHSBSP) mammogram readers to learn to interpret FAST MRI.
Lyn leads the FAST MRI Programme of Research and is currently Chief Investigator for the FAST MRI DYAMOND Study, funded jointly by the Medical Research Council (MRC) and the NIHR, through a grant from their Efficacy and Mechanism Evaluation (EME) funding stream. The study will be the first in the UK to offer a FAST MRI to women who have average mammographic density and are having their first NHS screening mammogram.
Lyn lectures nationally and internationally on breast MRI and has written sessions on breast MRI for the National Breast Imaging Academy.
Dr Becky Geach
Consultant Radiologist
Dr Geach is a Consultant Radiologist and the Radiology Research Lead at North Bristol NHS Trust. Becky has been part of the FAST MRI Programme for nearly five years previously co-leading on the FAST MRI reader training. She is now a co-lead for the EME NIHR funded grant FAST MRI DYAMOND study which started in May 2023.
Becky has also presented at a number of national conferences including a poster on “Abbreviated Breast MRI – A systematic review” which was awarded third prize in the scientific poster category at the British Society of Breast Radiology Annual Meeting. She is the lead author of the FAST MRI Team’s systematic review and meta-analysis of abbreviated breast MRI, published in Clinical Radiology in 2021.
Dr Katherine Klimczak
Consultant Radiologist
Katherine graduated from the University of Wales in 2008 and worked in Swansea before crossing the border to undertake Radiology training in the Severn Deanery. She has been a Consultant Breast Radiologist at North Bristol NHS Trust since 2018 and has been a contributing member of the FAST MRI Research Programme since 2020. Katherine is currently the Chief Investigator for the FAST MRI ENAID project and FAST MRI OPERA study.
Sadie Mckeown-Keegan
FAST MRI Programme Manager
Sadie is the FAST MRI Programme Manager. Sadie co-ordinates the grants, approvals, contracts and site set up for new studies and general management of the studies in progress to maintain oversight of the study, ensuring they run to time, target and protocol.
Dr Sam Harding
Senior Research Fellow
Dr Sam Harding is a Senior Research Fellow at North Bristol NHS Trust. She is a Health Psychologist and PhD. Sam is a mixed methodologist researcher with additional expertise in scoping and systematic reviews. Her research portfolio covers a diverse set of medical fields from Hyperbaric Medicine, Speech and Language Therapy and Head and Neck cancer, to working with the FAST MRI team. Sam’s interests lay in quality of life and the impact of medical interventions on chronic conditions. She also investigates lived experiences in relation to treatments, interventions and education. Sam has worked on a number of FAST MRI projects including qualitative research, supporting Public & Patient Involvement.
Professor Janet Dunn
Cancer Trials Lead, Warwick Clinical Trials Unit
Professor Janet Dunn is the Deputy Director of Warwick Clinical Trials Unit (CTU) at Warwick Medical School, University of Warwick. She has over 25 years clinical trials experience. Janet has been instrumental in supporting the set up of the FAST MRI programme and the running of the studies with wide knowledge.
Dr Andrea Marshall
Associate Professor, Warwick Clinical Trials Unit
Dr Andrea Marshall is an Associate Professor at Warwick Clinical Trials Unit (CTU) at Warwick Medical School, University of Warwick. Specialising in statistical design and analysis of randomised clinical trials Andrea has led all the quantitative analysis for the FAST MRI studies.
Professor Sian Taylor-Phillips
Professor of Screening & Test Evaluation
Professor Sian Taylor-Phillips leads Warwick Screening at Warwick Medical School, University of Warwick. Sian has brought a wealth of screening experience to the FAST MRI programme, her research focuses on synthesising evidence for national policy advisers such as the UK National Screening Committee and NICE.
Dr Sarah Vinnicombe
Consultant Radiologist
Dr Sarah Vinnicombe is currently Lead Breast Radiologist, Deputy Director of Screening and Consultant Radiologist at the Thirlestaine Breast Centre, Cheltenham. Until 2011, she was lead Breast Radiologist and Director of Breast Screening at Barts Health, when she moved to the University of Dundee to take up a Senior Lectureship in Cancer Imaging, a post she held till 2018.
In Cheltenham, she leads on breast imaging research and is PI and co-investigator on a number of national and local studies. Her main research interests are in breast density, risk adapted screening, imaging of response to neoadjuvant therapy and novel breast imaging techniques. She sits on the NHS BSP Research Advisory Committee and is a member of the NHS BSP Clinical Professional Group, advising on all radiological aspects of the Breast Screening Programme.
She is a Trustee of Symposium Mammographicum and Vice Chair of the Organising Committee and has been President of the British Society of Breast Radiology since November 2019.
Dr Chris Foy
Statistician & Methodologist, Research Design Service
Chris is a statistician and methodologist for the Research Design Service of the NIHR. Chris has worked with Lyn from the start, from when it was all just an idea. With Chris’s expertise in statistics, clinical trials, research ethics and health economics he has supported Lyn to set up the FAST MRI programme and continues to be a valued advisor.
Professor Claire Hulme
Professor of Health Economics
Professor Claire Hulme is a Professor of Health Economics, Director of the Institute of Health Research at the University of Exeter. Claire has been invaluable, supporting the FAST MRI Programme with reviews of the cost and cost effectiveness of imaging and Budget Impact Analysis. Claire was also invited to present her abstract “Estimating the cost impact of including Magnetic Resonance Imaging (MRI) in the National Health Service Breast Screening Programme (NHSBSP) for population-risk women in England” at the Symposium Mammographicum in February 2021.
Professor Mark Halling-Brown
Head of Scientific Computing
Professor Mark Halling Brown is the Head of Scientific Computing at Royal Surrey County Hospital. He leads a team in the development of Clinical Systems and databases, services and techniques for visualization, analysis and investigation of medical imagery, improvement of QA services, clinical applications and AI/Machine learning on medical images.
His team has developed the OPTIMAM project has led to the creation of one of the world’s largest mammography image databases (OMI-DB). Our recent focus involves the development and validation of AI tools for use in healthcare.
Dr Elizabeth O’Flynn
Consultant Breast Radiologist
Dr Elizabeth O’Flynn is a Consultant Breast Radiologist at St George’s Hospital in London. Dr O’Flynn completed an MD thesis in breast imaging while at the Institute of Cancer Research and Royal Marsden Hospital. She has published on breast related topics, has a book chapter on functional breast imaging techniques and lectures nationally and internationally on all aspects of breast imaging.
Miss Shelley Potter
NIHR Clinician Scientist
Miss Shelley Potter is an NIHR Clinician Scientist, Associate Professor of Oncoplastic Breast Surgery and Consultant Oncoplastic Breast Surgeon, dividing her time between the University and the Bristol Breast Care Centre at North Bristol NHS Trust.
Shelley’s research interest include using pilot and feasibility work to inform the design and conduct of large-scale RCTs in breast surgery. She co-led the NIHR funded iBRA (Implant Breast Reconstruction evAluation) study which aimed to inform the feasibility, design and conduct of an RCT in implant-based breast reconstruction and is now leading Best-BRA, an implant reconstruction RCT.
Shelley will be supporting the FAST MRI study with her expertise on cancer treatments and outcomes.
The BIRCH team
The BIRCH team provides scientific and technical support to a wide range of services within UHBW, external NHS Trusts, NHS screening programmes and other institutions in the region. We have expertise in Magnetic Resonance Imaging (MRI), ultrasound (US) and scientific computing (image processing). Our key services in MRI cover procurement, acceptance and quality assurance (QA) testing, MR safety expert advice, image optimisation and adoption of new techniques. We have also developed in-house phantoms and software for semi-automated MRI QA image analysis.
Personnel involved:
- Dr Sian Curtis (PhD) is a registered Principal Clinical Scientist specialising in MRI and ultrasound and has worked at UHBW for over 20 years. She is a corresponding member (and previous Chair) of the Institute of Physics and Engineering in Medicine’s Magnetic Resonance Special Interest Group (IPEM MR SIG), a British Medical Ultrasound Society (BMUS) council member and the BMUS representative on the IPEM Ultrasound and Non-Ionising Radiation SIG (IPEM UNIR SIG).
- Mr Ron Hartley-Davies is a registered Principal Clinical Scientist specialising in MRI and scientific computing and has worked at UHBW for over 20 years. He is the designated MR Safety Expert (MRSE) for UHBW.
- Mr Jonathon Delve is a registered Clinical Scientist specialising in MRI and scientific computing.
- Dr Holly Elbert (PhD) is a registered Clinical Scientist specialising in MRI, ultrasound and scientific computing. She did a DPhil in Astrophysics before training in Medical Physics at UHBW from 2016-2019. During her training she did projects in phantom construction and functional MRI analysis, and a placement at the Cardiff University Brain Research Imaging Centre on diffusion MRI analysis.
Public Involvement Members
The FAST MRI programme includes several Public and Patient Involvement representatives. They sit on the Trial Steering Committee giving input into the conduct of the study progress of the trial/project, adherence to the protocol, and the consideration of new information of relevance to the research question. They comment on the rights, safety and well-being of participants and proposals for substantial protocol amendments and provide advice to the sponsor and funder regarding approvals of such amendments.
Their membership is invaluable as they are able to ensure that patients are at the centre of the research conducted as part of the FAST MRI programme; reviewing documentation to make sure that it is written in lay language and that results from the studies are disseminated to the general public.
Public Representatives:
- Jenny Wookey is the Chair of BUST (North Bristol Trust’s Breast Cancer Unit Support Trust).
- Jan Rose is a member of the ICPV (Independent Cancer Patient’s Voice) and National Cancer Research Institute Breast Group.
- Helen Matthews works for the civil service in educational policy. She was diagnosed with high grade ductal carcinoma in situ (DCIS) in November 2021 following a routine screening mammogram, underwent treatment and is now continuing to lead a healthy and active life. She has joined the team to encourage the expansion and effectiveness of routine testing, knowing that it has saved her life.
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Dietary advice for avoiding lactose
What is lactose intolerance?
Lactose intolerance means that your body cannot digest lactose. Milk is made up of fats, proteins, and sugar (carbohydrate). Lactose is a type of sugar (carbohydrate that is in milk and milk products.
What are the symptoms?
- Wind (gas/farting).
- Bloating.
- Tummy ache.
- Stomach cramps.
- Tummy rumbling.
- Nausea (feeling sick).
- Diarrhoea (loose poo/stools).
What are the causes?
Lactose intolerance happens when your body does not make enough lactase.
Lactase is an enzyme that breaks down lactose; it is made in the lining of the small bowel. Enzymes break down sugars into smaller parts so they can pass from your gut into your body.
Types of lactose intolerance
There are two types of lactose intolerance: primary and secondary.
- Primary lactase deficiency is a lifelong genetic condition (runs in families). It is most common in people from Africa and Asia, but anyone can have it. 2 out of 3 people in the world have this. You may produce lactase as a child, but less lactase as you grow up.
- Secondary lactase deficiency is usually short term. It is due to illnesses that affect your small bowel such as coeliac disease, inflammatory bowel disease (IBD), gastrointestinal infections, and abdominal surgery.
Lactose cannot be broken down or absorbed without lactase. It will pass into the colon instead. In the colon it is fermented which makes gas. Lactose also pulls water into the bowel which is why it can also cause loose stools.
Lactose intolerance is not the same as an allergy. If you have lactose intolerance you may be able to manage some lactose in your diet in smaller amounts. However if you have a milk protein allergy you need to strictly avoid all milk products.
Some people do not make the lactase enzyme but do not get bad symptoms. Other people can make the lactase enzyme but still have bad symptoms. Lactose may make you feel ill but it will not do any long-term harm or hurt your body. You need to work out how much lactose is right for you and your symptoms.
Diagnosis
Hydrogen breath test
In this test you drink a special high dose lactose and they test how much hydrogen gas is in your breath. If your body does not break the lactose down, the bacteria that live in your colon will ferment it. This makes a lot of hydrogen gas so a high level of hydrogen in your breath means you have lactose intolerance.
The test results are not perfect. Some people have a positive breath test but no symptoms. Some people have a negative test but still have symptoms. Sometimes a lactose free trial is better.
Lactose free trial
This is a good choice instead of the breath test.
Stop having lactose for a short time (around 2-4 weeks). If you do not feel better, then you do not have lactose intolerance and you can start having lactose again.
You can talk to your doctor or dietician about what else could help your symptoms.
Which foods contain lactose?
Lactose is in milk including breastmilk, cow’s milk, sheep’s milk, and goat’s milk. All products containing milk or made from milk contain lactose.
Everyone will tolerate a different amount of lactose. Most people can have a low lactose diet, but some people will need to be stricter. For example, you might be able to have a splash of milk in tea, but you might have symptoms if you had a milky coffee.
- Start by strictly avoiding lactose.
- If your symptoms get better, you can slowly increase your lactose intake.
- Most people can have some lactose. Try to spread it out through the day.
The table on the next page shows how much lactose is in different foods.
The amount of lactose in some foods can vary. There is not an exact amount of lactose in the table for these foods, but you can see which foods are lactose-free, low in lactose, or high in lactose. Some have a specific number of grams of lactose per 100g next to them.
Food groups and how much lactose they have
| Food group | High lactose (more than 2g/100g) | Low lactose (up to 2g/100g) | Lactose free |
|---|---|---|---|
| Milk |
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| Other dairy |
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| Cheese |
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| Cereals |
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| |
| Bread |
|
| |
| Rice |
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| Pasta |
|
| |
| Treats/snacks |
|
|
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| Fats |
|
| |
| Meat, fish, eggs, and alternatives |
|
|
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| Sauces/ condiments |
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| |
| Fruits, vegetables, nuts, and pulses |
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|
|
Checking labels
It is the law that if a product contains milk products they will be listed in bold, underlined, or highlighted.
The ingredients list is in weight order, with the largest first. If it is near the bottom of the list then there is a smaller amount in the food. If milk is one of the last ingredients in a long list it might be fine.
Vegan foods are lactose-free.
Check labels for:
- Milk
- Milk solid
- Skimmed milk powder
- Cream
- Butter
- Buttermilk
- Whey
“May contain”
Most people with lactose intolerance can have a food that says:
- May contain milk.
- Made in a factory that handles milk.
- Not suitable for people with a milk allergy.
Confusing ingredients
Casein and milk protein are sometimes listed within the ingredients and are proteins found in milk. You can have both these ingretients.
Some people have an allergy to milk protein but this is not the same as lactose intolerance.
Medications
Some tablets contain very small amounts of lactose. Do not worry unless you take a lot of tablets.
You can talk to the pharmacist about changing to lactose free medicine. Do not stop taking a medication without speaking to your doctor or pharmacist first. Lactulose (a laxative) is not the same as lactose).
Nutrients
Dairy provide some key nutrients. You need to make sure you get enough of these. Remember that most cheese is low in lactose so may be okay for you.
Vitamin B12
You need vitamin B12 to help with energy release, healthy blood, and the nervous system.
Non-dairy sources of vitamin B12:
- Meat.
- Eggs.
- Fortified breakfast cereal.
- Yeast extract (marmite).
- Salmon.
- Cod.
Calcium
You need calcium for bone health. Milk and dairy are the main sources of calcium.
- Lactose-free milk has the same amount of calcium as cow’s milk.
- If you use a milk alternative (oat/soya/coconut/nut milk), make sure it has added calcium.
- Organic milk alternatives do not have calcium added to them.
- Tinned fish with bones(sardines, pilchards, salmon)are very high in calcium.
- Oranges, almonds, Brazil nuts and tofu also contain calcium but it is not so easily absorbed.
You may need to take a calcium tablet if your bone health is high risk such as:
- Breastfeeding mothers
- Post-menopausal women
- Coeliac disease
- Inflammatory bowel disease
Vitamin D
You need vitamin D to use calcium. The body makes vitamin D from sunlight on your skin. In the UK there is not enough sunshine in autumn or winter to make all the vitamin D that we need. Consider taking a vitamin D supplement daily in autumn and winter.
Vitamin D is in oily fish, red meat, offal, and egg yolks. Some breakfast cereals, margarines and non-dairy milk alternatives have vitamin D added.
Protein
You need protein for growth and repair, and to keep you strong. Some lactose free milks have more protein than others.
Lactose free cow’s milk and soya milk contain the most protein; oat and nut milks contain the least protein.
Eat 2 - 3 portions of high protein foods daily.
Non-dairy sources of protein include meat, fish, eggs, beans/ pulses, tofu, and nuts.
Meal ideas
Breakfast
- Cereal with lactose free milk
- Toast with dairy free spread and jam
Lunch
- Sandwich with dairy free spread and tuna/ham/chicken/ hard cheese, and salad.
- Homemade soup without milk or cream.
- Jacket potato with dairy-free spread, tuna/baked beans/ hard cheese, and salad.
- Eggs or baked beans on toast with dairy free spread.
Evening meal
- Meat/chicken/fish with potatoes or rice and vegetables.
- Omelette/frittata with side salad.
- Spaghetti Bolognese.
- Curry made without yoghurt, with rice and dahl.
Snacks
- Fruit.
- Nuts.
- Crisps (not cheese and onion).
- Oatcakes/ rice cakes/ crackers with dairy-free spread.
- Tea, coffee, squash, lactose free milk.
- Dark chocolate.
- Biscuits.
Lactase enzymes
You can buy lactase enzymes from pharmacies, health food shops and online. They may reduce your symptoms if you do eat lactose by replacing the lactase that your gut does not make. There is not much research on how well they work.
Can I ever eat foods containing lactose?
Most people find that their symptoms get better after cutting out lactose for 4 weeks. If you have secondary lactose intolerance, it can take longer.
Once your symptoms get better, try to put some lactose back into your diet. Start with a very small amount and increase slowly. Most people can manage some lactose but everyone has a different limit.
- You should start by trying foods that are lower in lactose such as hard cheese.
- Try a small amount and increase it gradually until you find the level you can manage.
- Then you can try foods that are higher in lactose, like milk.
- Start with a splash of milk in your tea/coffee or on your cereal and build it up slowly.
- When you start to get symptoms, you have found your limit.
What if symptoms don’t improve?
If you are lactose intolerant then your symptoms should get better when you take lactose out of your diet.
If you do not feel better, then you do not have lactose intolerance and you can start having lactose again. You can talk to your doctor or dietitian about what else could help your symptoms.
Risk of anaphylaxis (serious allergic reaction) when reintroducing lactose
If you have ‘atopy’ (eczema, asthma, other allergies, hay fever), there is a very small risk that you can develop an allergy to milk protein if you completely avoid it for a long time.
To avoid this risk you should try to keep some low lactose dairy products in your diet such as hard cheese.
© North Bristol NHS Trust. This edition published December 2025. Review due December 2028. NBT003440.
PEG, PIGG and RIG
This page will provide you with information about longer term feeding tubes. The page will tell you what to expect before, during and after your operation.
A member of the medical team, your dietitian or your speech and language therapist can answer any further questions you may have.
What is a feeding tube?
A feeding tube is a small tube that passes through the skin into your stomach. This allows special liquid feed, water and medicines to be passed into the stomach. It can help to meet your dietary needs.
The three different operations used in North Bristol Trust are:
- Percutaneous Endoscopic Gastrostomy (PEG) – uses a flexible camera (endoscope) that passes into your stomach.
- Per-oral Image Guided Gastrostomy (PIGG) – the tube is placed using x-ray.
- Radiologically Inserted Gastrostomy (RIG) – the tube is placed using x-ray.
The most common tube is the PEG. You may have a RIG or PIGG tube if you cannot have sedation or if the camera cannot access your stomach. We will discuss with you which type is best.
Why do I need a feeding tube?
There are many reasons why you may need a feeding tube. We will discuss this fully with you. You may consider a feeding tube when:
- You are losing weight.
- You cannot eat or drink enough.
- Eating and drinking leads to choking or discomfort.
- Your breathing function is reduced or you get chest infections.
- It takes a long time to eat and it is no longer enjoyable for you.
- You have been getting nutrition through a tube in your nose for many weeks (nasogastric tube (NG)).
- The feeding tube in your nose keeps coming out.
- It is unsafe for you to eat or drink.
Sometimes feeding tubes are placed if you have problems with swallowing.
Will a feeding tube stop me eating and drinking?
Not always, but this will be discussed with your doctor or speech and language therapist.
The tube itself will not affect your ability to eat and drink. Some patients decide to still eat small amounts for pleasure. Some use the tube to provide extra nutrition on top of what they eat and drink.
What are my other choices if I decide against having one?
If you decide not to have a feeding tube, it is unlikely that there are any other ways to meet your dietary needs. You should discuss your choices with your doctor and dietitian.
If you decide against tube feeding you will be supported in this decision. Please make sure you know the risks you may be taking.
How do I prepare for a feeding tube?
All types of feeding tube are placed in hospital.
If you are not already on a ward:
- A few days before the operation you may have a blood test and a swab taken by the GP.
- You may be asked to stop taking certain blood thinning medications for a few days before the operation. You may receive a phone call with more information before the operation.
- You will need to come in on the day of the operation.
If you are an inpatient:
- The ward team will advise you about stopping any blood thinning medications. They will also complete blood tests.
Before the operation:
- You will be asked to have no nutrition (food) for at least six hours before the operation. You will also be asked to have no fluids for two hours before the operation. You may be given medication through a drip.
- The doctor will examine you, explain the operation and ask you to sign the consent form.
You will likely stay in hospital for at least a night for monitoring.
Are there any risks?
Most people will not have any serious issues from their tube placement. However, the risks of a complication increase with age. Your risk of having issues is also increased if you have from heart, chest, or other medical problems, such as diabetes, or are overweight, or smoke.
Major complications occur in around 3 in 100 people and include:
- Breathing problems.
- Heart complications.
- Peritonitis (swelling in stomach wall).
- Bleeding.
- Bowel perforation (accidental tear in your gut).
- Wound infection.
- Fistula formation (two organs connect).
- Leaking around the tube.
- Tube blockage.
- Buried bumper (stomach grows over part of the tube).
- Over granulation (excess skin grows on the tube).
- Infection.
There is a low mortality rate. To minimise complications, we will choose the technique that is safest for you.
How is the tube placed?
If you are having a PEG
This is done in the Endoscopy Department. You will be given a local anaesthetic to your stomach, some throat spray, and light sedation (to make you feel relaxed). An endoscope (a flexible tube with a light and camera at one end) is passed down into your stomach and lit up.
A small cut is made in your stomach where the light shines and the tube is then passed through. The operation usually takes around 20 minutes.
You will be in the unit for some time before and after the operation.
This is what a PEG tube looks like:
If you are having a PIGG
This is done in the Interventional Radiology Department. A narrow tube is passed through your nose into your stomach. Air will be passed into your stomach through the tube to make it visible on X-ray.
Local anaesthetic will numb your stomach. A small cut is made in your stomach and a wire is passed through to your mouth. The feeding tube is then passed through.
This operation typically takes 30 minutes.
This is what a PIGG tube looks like:
If you are having a RIG
This is done in the Interventional Radiology Department. A narrow tube is passed through your nose into your stomach. Air will be passed into your stomach through the tube to make it visible on X-ray.
Local anaesthetic will numb your stomach and stitches are placed to hold the stomach close to the wall of the abdomen. A small cut is made near the stitches and a feeding tube is passed through into the stomach.
This operation typically takes 30 minutes.
This is what a RIG tube looks like:
What happens afterwards?
- Once back on the ward it be 4-24 hours before you can use the tube. The nursing staff will tell you when you can start to use the tube.
- Water will be put through the tube first, followed by feed. Your dietitian will discuss the amounts and timings with you.
- The nutrition given through the tube is a prescribed liquid mix of the nutrition your body needs. We call this “specialist feed”. The specialist feed, water, and medications can be put down the tube using a special syringe or pump.
- You will need to sit upright during feeding and for 30-60 minutes afterwards.
- The dietitians will provide training on how to give the feeds and water flushes. This will be done as soon as possible so that you can go home quickly. Either the nursing staff on the ward or the community feeding team can provide further training.
After your tube has been inserted there is an increased risk of complications. If you are going home within 72 hours after the tube is inserted, you will need to be aware of these.
If there is:
- Leaking of fluid around the tube.
- Pain on feeding.
- Prolonged or severe pain after the operation.
- New bleeding.
Stop feed immediately
Phone your community feeding team or visit your local accident and emergency department for urgent advice
How do I look after my feeding tube?
PEG / PIGG
1-5 days after insertion
Once the tube is safe to use, you will begin to receive feed, medications, and water through the tube.
Flush the tube with water before and after you give the feed or medications to prevent the tube blocking
You should flush the tube with a minimum of 30mls of water every day if you are not giving nutrition or medications through the tube.
Clean the tube site (area where tube enters the skin) every with sterile water. Do this once or twice a day for the first 5 days.
After 5 days, use mild soapy water. Dry the area around the tube gently but thoroughly. Do not reposition the fixation device (triangle) unless advised.
Check for signs of pain, redness, swelling or leakage. Report any concerns to medical staff or the community feeding team.
The tube site doesn’t need a dressing after the first1-2 days. A simple gauze dressing can be used if there is leakage around the tube site.
2 weeks after insertion
Continue to clean the tube site including around the fixation device with mild soapy water and dry well.
2 weeks after insertion, or when the tube site has healed, it is important to prevent the overgrowth of skin around the tube inside the stomach. We call this ‘buried bumper’ syndrome.
To prevent a ‘buried bumper’, the tube needs to be moved daily. This is called “advancing and rotating” the tube. The dietitian will show you how to do this before you leave hospital. The community feeding team will also demonstrate this.
To “advance and rotate” the tube:
- Release the blue clip on the fixation device (triangle).
- Move the fixation device at least 4cm away from the stomach.
- With mild soapy water, clean both the tube site and the length of tube between the fixation device and stomach.
- Push 3-4cm of tube into the stomach.
- Turn the tube in a full circle (360 degrees).
- Pull the tube back until you feel some resistance.
- Wipe the tube clean.
- Place the fixation device approximately 5mm (pound coin width) from skin and close the blue clip. See Fig 6 and Fig 7 below.
This should only be done when the tube site is healed.
RIG
1-7 days after insertion
You shouldn’t eat or have anything via the tube for at least 4 hours after insertion.
You shouldn’t eat or have anything through the tube for at least 4 hours after insertion.
After this the tube will be flushed with 50ml of sterile water. If there are no concerns after 2-3 hours, then the tube is safe to use.
If there are signs of pain or leakage, let the nurse know.
You may have a dressing over the tube. The dressing should be changed every day for the first 7-10 days after insertion.
Clean the site every day with sterile water. You can lift the edges of the bolster (white circular disk) and clean underneath. Make sure the area around the tube is dried well.
Do not move the bolster for first 2 weeks after insertion.
Always check the marking where the bolster sits before putting anything through the tube. If there is a change in position of the tube do not use and contact the community feeding team immediately.
7-10 days after insertion
Some people like to keep a simple dressing on the tube but it is no longer needed.
Continue to clean the tube site with sterile water and dry well.
2 weeks after insertion
The stitches can be removed if they have not dissolved after 2 weeks. This can be done by the nutrition nurses.
The tube can be rotated daily once stoma tract has healed to prevent any overgrowth of skin. To do this, clean around the site with warm mild soapy water and dry well. Make sure you lift the edges of the bolster and clean underneath. Turn the tube in a full circle (360 degrees).
The water in the balloon should be changed 2 weeks after insertion and once a week after that. This is to make sure the balloon stays inflated to hold the tube in place.
In hospital, the ward dietitian or nurse will change the balloon water. You will be shown how to do this by the dietitian or community feeding team. When changing the balloon water, you can “advance and rotate” the tube at the same time. This helps prevents any overgrowth of skin on or around the tube.
To “advance and rotate” the tube:
- Make note of the mark on the tube where the bolster sits.
- Gently move the bolster away from the skin surface by at least 4cm.
- With mild soapy water, clean both the tube site and the length of tube between the bolster and stomach.
- Push 3-4cm of tube into the stomach.
- Turn the tube in a full circle (360 degrees).
- Pull the tube back until you feel some resistance.
- Wipe the tube clean.
- Place the bolster back to the original position approximately 5mm (pound coin width) from skin.
The tube needs to be changed around 3 months after insertion. This is usually done where you live by the community feeding team.
Further tube changes will usually be done every 3-6 months. If you wish, you or your carers can be trained to change the tube yourselves.
What help is available once I leave hospital?
Your ward dietitian will refer you to the community feeding team or an alternative service in your area. The community feeding team are known as the home management services (HMS).
The team comprises of dietitians, home enteral feeding nurses and a delivery company. They will contact you to arrange a monthly delivery of feeds and plastic equipment, such as syringes.
We may send you home from hospital with a small supply of feeds and equipment.
Your ward dietitian will explain your home feeding plan and provide contact details for the HMS team. Your GP may also be involved in the management of your tube.
What do I do if the tube becomes blocked?
Medicines can block the tube if they are not given correctly. You may need to be prescribed medicines in a more suitable form such as liquid. Your doctor or pharmacist should arrange this for you. Each medication should be given individually.
To help prevent tube blockage, we advise you do not give anything other than the feeds, water, and medications through your tube.
If you are unable to flush the tube or can see a blockage you should:
- Ensure all clamps are open and the tube is not bent.
- Massage the tube to try to dissolve any blockages.
- Flush with 50ml warm or soda water, leave for 30mins and re-flush. Never use pineapple juice, cola or lemonade as they can make the blockage worse.
- Try the ‘push/pull’ action with a syringe as advised by nursing staff.
- Contact community feeding team or call the 24 hour helpline on your feeding regimen.
Note: For a RIG tube, only trial these methods if the tube can be advanced and rotated. Otherwise, contact your community feeding team.
How long will I need the tube?
The tube can be removed if you no longer need it or want it removed. If well cared for can last several years.
The RIG tube will be changed every 3-6 months.
What if the tube is accidentally removed?
For PEG/PIGG tube
If the tube comes out you will need to go to your nearest accident and emergency department immediately. The longer the tube is out, the greater the risk of the site closing over.
For RIG tube
If your RIG tube comes out, ring the community feeding team or 24 hour helpline. You may need to go to your nearest accident and emergency department to have another tube inserted.
The community enteral feeding nurses may have trained you to insert a device into the stoma called Corstop ACE stopper or ENPlugs.
In the case of the tube coming out, you can insert this device. Then call the community feeding team or 24 hour helpline for further advice.
Common questions
Can I shower/bath?
You can shower from the day after the tube has been placed. Do not have a bath for at least 4 weeks until the area around the tube has healed. Make sure the end is closed and clamp applied before washing. Fully dry the area around the tube after.
Can I swim?
Only once the area around the tube has healed. Use a waterproof dressing. Fully dry the area around the tube after.
Can I go on holiday?
The tube does not stop you going on holiday. You may need to take a GP letter and insurance documents with you. Contact the home feeding team for further information.
Will I be able to move freely?
The tube should not restrict your everyday activities. You can cover the tube with loose clothing.
What happens if I become unwell?
If you feel unwell and are unable to give yourself your feed, it is important to keep hydrated. Flush the tube regularly with water to prevent the tube blocking and to keep hydrated. Speak to your GP, nurse or dietitian if you are concerned.
How do I keep my mouth clean?
You will need to keep your mouth and teeth clean by brushing regularly. This is important even if you cannot eat and drink. A mouthwash and artificial saliva spray may help to keep your mouth moist. The speech and language therapist can guide you on this.
Who pays for the feeds?
If you are an NHS patient and registered with a GP, your local health authority will pay for the feeds.
What do I do if I experience any pain, discomfort or issues with my tube site?
If you experience any pain or discomfort then stop any feed. Contact the community feeding team for further advice. Contact the community feeding team if the skin around the site becomes red and sore or if there is oozing or bleeding.
Further information
Nutricia website provides information on specialist feed and using a feeding pump. There is also information on the nursing team who help people with feeding tubes:
PINNT helps people on enteral and parenteral nutrition providing advice and local help groups.
- Phone 020 3004 619
- PINNT: Advocacy & support for people on home artificial nutrition (HAN): parenteral, enteral & oral nutritional supplements. | PINNT
References
- Arvanitakis, M., Gkolfakis, P., Despott, E., Ballarin, A., Beyna, T., Boeykens, K., Elbe, P., Gisbertz, I., Hoyois, A., Mosteanu, O., Sanders, D., Schmidt, P., Schneider, S. and van Hooft, J., 2020. Endoscopic management of enteral tubes in adult patients – Part 1: Definitions and indications. European Society of Gastrointestinal Endoscopy (ESGE) Guideline. Endoscopy, 53(01), pp.81-92.
- Gkolfakis, P., Arvanitakis, M., Despott, E., Ballarin, A., Beyna, T., Boeykens, K., Elbe, P., Gisbertz, I., Hoyois, A., Mosteanu, O., Sanders, D., Schmidt, P., Schneider, S. and van Hooft, J., 2020. Endoscopic management of enteral tubes in adult patients – Part 2: Peri- and post-procedural management. European Society of Gastrointestinal Endoscopy (ESGE) Guideline. Endoscopy, 53(02), pp.178-195.
- Nutricia Homeward (2021) Balloon Gastrostomy Tube Advice.
- Potack, Z. and Chokhavatia, S., 2008. Complications and controversies associated with Percutaneous Endoscopic Gastronomy. Report of a Case and Literature Review. The Medscape Journal of Medicine, 10(6), pp. 142.
- Toussaint, E., Van Gossum, A., Ballarin, A. and Arvanitakis, M., 2015. Enteral access in adults. Clinical Nutrition, 34(3),pp. 350-358.
© North Bristol NHS Trust. This edition published October 2024. Review due October 2027. NBT002346.