Bryony Dean Franklin
Bryony Dean Franklin is a pharmacist by background, based in hospitals for most of her working life. She is currently Professor of Medication Safety at University College London School of Pharmacy, Visiting Professor at Imperial College, and a hospital pharmacist in West London. She is interested in developing and testing ways of making healthcare safer, particularly in relation to medication, and in how we can better involve patients and their families in their own healthcare. She has helped ‘translate’ hospital terminology, customs and practices for many of her friends, family and acquaintances, and is often struck by how the hospital experience can be much more positive when you understand a little more about it and what you and your family and friends can do to help.
Charles Vincent trained as a clinical psychologist and worked in the NHS for several years before becoming a researcher. Since 1985 he has carried out research on medical error and risks to patients, and studied how to improve the safety and quality of healthcare. He has always been particularly concerned with how patients can be supported during stressful experiences in healthcare. He was a Professor of Psychology at University College London before moving to Imperial College London in 2002 where he was Director of the Imperial Centre for Patient Safety & Service Quality. He is now Professor of Psychology at University of Oxford. In recent years, he spent many hours in hospitals with each of his parents before they died, while they attempted to navigate the healthcare system together.
Appendix: Useful Sources of Information
There are many organisations who dedicate themselves to the support of patients, families and carers with particular illnesses, or who provide more general information about healthcare. Below we highlight some organisations that we particularly recommend, and their websites.
GENERAL SOURCES OF ADVICE
Provides information from the UK National Health Service on conditions, treatments, local services and healthy living.
The independent consumer champion for health and social care in England, which aims to develop new ways of engaging and informing people, especially those who sometimes struggle to be heard.
An online medical resource, supplying patients with evidence based information on a wide range of medical and health topics.
The Patients Association
A charity advocating better information for patients and the public, equal access to high-quality healthcare for patients and the right for patients to be involved in all aspects of decision-making.
Scotland Patients’ Association
Provides support and information for all those using services delivered by hospitals or in the community in Scotland.
Patient Advice and Support Service Scotland (PASS)
An independent service providing free, accessible and confidential information, advice and support to patients, their carers and families in relation to NHS healthcare in Scotland.
Patient and Client Council (Northern Ireland)
Promotes a health and social care service in Northern Ireland that is shaped by patients, clients, carers and communities.
Community Health Councils Wales
Provides help and advice if you have problems with NHS services in Wales, or wish to complain; ensures that patients’ views and needs influence healthcare policy.
SPECIFIC ILLNESSES AND TREATMENTS
The leading diabetes charity in the UK; cares for, connects with and campaigns on behalf of all people affected by and at risk of diabetes.
The British Heart Foundation
The major heart charity in the UK and the largest independent funder of cardiovascular research, providing extensive patient information.
The leading voice of learning disability, supporting people with a learning disability and their families and carers.
Provides support for stroke survivors, campaigns for better stroke prevention and care, and funds research into stroke.
A membership organisation working to improve the quality of life of people affected by dementia across the UK.
UK Sepsis Trust
Provides support for those affected by the scale and significance of the impact of severe sepsis on sufferers and their families.
Provides support for patients, families and relatives affected by critical illness.
NHS Blood and Transplant
Scottish National Blood Transfusion Service
Welsh Blood Service
Northern Ireland Blood Transfusion Service
The collection of blood and subsequent dissemination to hospitals and clinics is delivered by four different organisations in the UK, dependent on location. Each organisation, on its website, gives important information about donating and receiving blood.
Anthony Nolan Trust
Provides support for patients with blood cancers.
Cancer Research UK
A major funder of research into cancer in the United Kingdom; provides extensive information about cancer.
Macmillan Cancer Support
Provides information and support for people with cancer.
Marie Curie Cancer Care
Provides care and support for people living with a terminal illness.
Breakthrough Breast Cancer
The UK’s leading breast cancer charity.
Roy Castle Lung Cancer Foundation
The UK’s only lung cancer charity, committed to medical research, reducing smoking and patient support.
Bowel Cancer UK
Works to save lives and improve the quality of life for all those affected by bowel cancer.
Intensive Care Society (ICS)
Represents intensive care professionals and patients in the UK; provides information for patients and families, and accounts of the experience of intensive care.
STAYING WELL IN HOSPITAL
Infection Prevention Society
Seeks to protect patients from preventable infections by working with patients and staff in all healthcare settings.
Promotes awareness of thrombosis, as well as research and care.
SUPPORT FOR OLDER PEOPLE
The UK’s largest charity working with and for older people.
Royal Voluntary Service
A volunteer organisation that supports and enriches the lives of older people and their families across the UK.
END OF LIFE CARE AND BEREAVEMENT
Cares for people with any terminal illness and their families, offering expert care, guidance and support to help people make the most of the time that remains to them.
Together for Short Lives
The leading UK charity for children with life-threatening and life-limiting conditions, and all those who support, love and care for them.
Cruse Bereavement Care
An organisation that people can turn to for help, support and guidance when someone important to them dies.
The youth website of Cruse Bereavement Care, a safe place for young people facing grief to share their stories and gain support from others.
Her Majesty’s Government Bereavement Advice
Provides practical information and support after someone dies.
Bereavement Services Association
An association that works across all types of organisations to promote excellence in the care of dying people.
Chapter #13: Looking inside the body
Doctors can often work out what is wrong with you by asking questions, examining your body and using simple investigations such as blood tests. However, sometimes other tests are needed which look inside your body to find out more about your condition. Modern technology has significantly improved our capacity to examine the inside of the body in ever-greater detail while minimising the risks involved. The investigations described in this chapter form a valuable part of a doctor’s toolkit to help decide what is wrong with you and plan your treatment. The two main ways of looking inside the body are:
- Radiology. Using X-rays and other types of scan to examine the body from the outside.
- Endoscopy. Looking inside the body using a long tube attached to a camera.
There are other ways of looking inside the body, some of which involve having an operation under general anaesthetic, but radiology and endoscopy are the most common. We focus here on their use to help make a diagnosis, although both are also sometimes used to provide treatment for specific conditions.
The radiology department is where you go to have X-rays and other scans. Radiology machines come in various shapes and sizes, but all of them are designed to work from outside the body in order to look inside. Many of the investigations are very straightforward and take only a few minutes.
Many X-rays and other scans simply require you to take up a particular position and remain still while the scanner takes pictures. However, some radiology investigations require you to be given a type of dye or ‘contrast medium’ to get a more detailed picture of what is going on inside your body. These dyes are often given as an injection through a drip that a member of staff will place in your vein before the scan. Sometimes you may need to drink the contrast as a liquid, or it may be given to you some other way, such as via the rectum (your bottom), or through tubes or drains already placed in your body. As you can imagine, some of these procedures may feel a little embarrassing and uncomfortable, but any discomfort should be minor and brief.
There are two main groups of hospital staff involved in performing and analysing the results of radiology tests:
- A radiographer is a healthcare professional who has received specialized professional training to perform scans. In the case of ultrasound, radiographers may also be trained to interpret the result of the scan and write a report of their findings. Other types of scan are generally sent to a radiologist to analyse.
- A radiologist is a doctor who specialises in reviewing the pictures provided by a scan. Radiologists interpret the results of your scan and discuss the findings with the team of doctors looking after you. This conversation and their report on the test often help your doctors to decide what is wrong with you. Radiologists may also perform certain tests and treatments themselves.
Types of radiological test
The term ‘radiological test’ covers a number of types of investigation, using different machines and procedures.
X-rays are the most common radiology test. For instance, you may have a chest X-ray if you have a cough or are short of breath, or an X-ray of an arm or leg to see if it is broken. Having an X-ray is a bit like having a photo taken. Sometimes jewellery or clothing may need to be taken off. You will sit or lie down alongside the machine; then a small dose of X-ray radiation is sent through the area being examined towards the X-ray film on the other side of your body. This radiation travels more easily through soft tissue and air than it does through dense tissues like bone. This means that the amount of radiation that reaches the film on the other side of the body will depend on what type of body tissue it has passed through. This creates a picture of the various structures on the X-ray film. You may have seen X-rays of broken bones where the break is clearly visible. Previously X-rays were done using a type of film which was then ‘developed’, but modern technology means it can all be processed electronically and viewed on a computer. Often the radiographer will take more than one X-ray to get a different view of the same part of your body, but generally the whole process will be completed within a few minutes.
Ultrasound scans work using the same principle as sonar on submarines. An ultrasound probe emits a very high frequency of sound waves, much higher than can be heard by human ears (hence the name ‘ultrasound’). These sound waves travel through parts of the body and are reflected by different bits of your body in different ways. The probe picks up the reflected sound waves, and a computer assembles them into an image, giving important information about the various organs within the body.
Ultrasound can be used in lots of different contexts. Some examples are pre-natal scanning of pregnant women to check the baby inside, scanning the abdomen to investigate the cause of abdominal pain, and scanning veins and arteries to ensure there are no clots, narrowings or swellings. The ultrasound machine can also help determine flow through these blood vessels. Nearly all scans are performed with you lying on a couch. The part of the body being examined will need to be exposed, then a type of jelly will be applied to the end of the ultrasound probe before the scan starts. (This can sometimes mean the tip of the probe is quite cold when it first touches your skin.) The person performing the scan will place the probe of the machine against your skin and move it around to look at different parts of the body underneath. Occasionally they may push a bit to try to see something more clearly, or ask you to hold your breath. Let them know if you find anything uncomfortable. The full scan can vary considerably in duration, from a few minutes to an hour or so, depending on what is being looked at and whether any interventions are planned. Depending on the part of the body being scanned, you may be asked not to eat beforehand, or you may be asked to drink plenty to make sure your bladder is full, which can have the effect of making the ultrasound picture of the pelvis clearer.
Computerised tomography (CT or CAT) scans
CT scanners make use of the same basic properties of radiation as X-rays. However, a CT scan involves a very large number of smaller X-ray images, taken from many different angles, which are then combined on a computer to create a large number of pictures of different areas of your body. Sometimes these are also referred to as CAT scans; CAT stands for ‘computerised axial tomography’. This kind of scan uses a computer to create images of the inside of your body in more detail than is possible with a straightforward X-ray. For example, CT scans are used to image the brain after a stroke, or to search for the potential spread of certain cancers to other parts of the body.
A CT scan involves lying down on a relatively narrow, firm couch that is then moved in and out of a round window within a larger machine. You are moved slowly through something that looks rather like a large doughnut. You are not in a tunnel, so most patients do not feel claustrophobic or enclosed. The machine will make a whirring noise while you have the scan, and the whole process will usually be completed in less than five minutes. You will need to lie still while your body is scanned, and if the scan includes your chest you will be asked to hold your breath for ten seconds or so. Depending on the part of the body being scanned, you may be given some contrast medium which shows up on the scan and helps produce a sharper picture. Often, getting onto the couch and getting the contrast medium ready takes longer than the test itself. Here is one patient’s experience.
“I had some ‘dye’ injected to make things show up on the scanner; this was done through a needle in the back of my hand. One of the staff said it can make you feel a bit flushed and as if you’ve wet yourself, which I didn’t believe until it felt just like that. I was very glad I’d been warned! You then lie down on a narrow bed and get pushed into the tube of the scanner, which can look a bit scary if you haven’t seen one before. It would be a good idea to find out what it looks like beforehand. My scan was of my head, so going into the machine head first did feel a bit claustrophobic and it felt like it was taking quite a long time even though it was probably only a few minutes. The machine whirrs a bit while it’s taking the scan. The staff have to leave the room to sit in a separate control room, so you do feel a bit all on your own, but there’s a button you can press if you need help. I didn’t need to use it, but it was nice knowing it was there.”
Magnetic Resonance Imaging (MRI) scans
This type of scan uses magnetic fields and radiowaves to produce detailed images of the inside of the body. It is often performed to look at the brain in a slightly different way to a CT scan, or to look at the ligaments and other soft tissues around joints such as the knee. Like a CT, it involves lying on a firm, narrow couch that moves in and out of a ring-shaped scanning machine. It makes more noise, and the machine itself is more like a tunnel than a doughnut, which can be a bit more uncomfortable for people who suffer from claustrophobia. MRI scans also take longer to perform, perhaps up to 30 minutes depending on what information is needed. You will generally be asked to lie as still as you can while being scanned.
The magnetic fields of the MRI scan exert a powerful attraction on some metal objects, which can be dangerous, so before you have an MRI there is a long checklist to fill out. Nearly all of the checklist concerns metal objects, such as pacemakers, implants and piercings, which are either inside someone’s body or attached to it. Great care is taken to ensure no metal gets anywhere near the very strong magnetic pull of the MRI machine when it is active. If you are at all unsure about whether or not you can undergo an MRI because of a history of metalwork being placed in your body, make sure you ask the staff about it and get their advice.
There are many other tests that fall under the general umbrella of ‘radiology’. Some are more specialist versions of those described above, such as X-rays combined with injecting or swallowing types of dye that show up on a dynamic (moving) X-ray. This is called ‘fluoroscopy’, and gives a picture which is more like a movie than a photograph. Others may be completely different, such as nuclear medicine tests, of which PET (positron emission tomography) scans and bone scans are some of the more common. While these may sound dramatic, they are done in a similar way to X-rays and involve using small doses of radioactive material to look at organs such as the lungs or thyroid gland.
Risks of radiology
The risks associated with any kind of radiological investigation are low and will be explained to you before you agree to have the test. You should ask the staff at any time if you have concerns, and you should also tell them if you have any allergies or other sensitivities.
Some people can have an allergic reaction to the ‘contrast’ used during scans. Many contrasts contain iodine as well as other chemicals, so you will be asked if you have any allergies beforehand. However, as with any substance, there is a small chance that you may have an allergic reaction after it is given even if you have never had it before or have never been allergic to anything in the past. Staff will monitor you to check for any kind of reaction. You should let them know if you feel unwell or notice any swelling or redness of your skin after having the contrast.
Many radiology tests, such as X-rays and CT scans, involve exposure to varying doses of radiation. Others, such as ultrasound and MRI, do not involve any radiation at all. The amount of radiation involved in individual tests varies. For example, a single X-ray of the chest is equivalent to roughly three days of background-level radiation that anybody encounters in day-today life outside the hospital. However, X-rays of other parts of the body and CT scans may involve significantly higher doses of radiation, equivalent to months’ or years’ worth of background radiation. A single CT scan of the abdomen, for instance, is equivalent to three years of background radiation, all on one day. The radiation dose involved is one of the factors that doctors will take in to account when suggesting that someone has a particular radiology test. It is also an important reason why doctors may avoid suggesting certain tests, or minimise their use, especially in certain groups of patients. For example, children and women of childbearing age seldom have CT scans if it can be avoided.
An endoscope is a long, thin tube, a bit like a flexible telescope, which is used to look inside the body. Images of the inside of the body are relayed through the endoscope to a screen. The tube is usually flexible, but may sometimes be rigid, and is inserted through a natural hole in the body to allow the person performing the endoscopy to look directly inside. Endoscopy simply means all the tests in which an endoscope is used.
All forms of endoscopy use fibreoptic technology to allow the endoscopist to remotely inspect parts of the body. A light is shone down the endoscope to light up the inside of the body. Usually, the reflected light is then sent back and collected by a camera which displays it on a monitor. Some new endoscopes have a microchip at the end which collects the picture and then sends it digitally along the endoscope to a computer; the computer then decodes the picture for display on a monitor. The ‘seeing’ end of flexible endoscopes can be angled different ways using controls at the ‘operator’ end, aiding careful inspection of your insides and also allowing delicate procedures to be performed.
Endoscopy is used to diagnose certain health problems that cannot be seen on radiological tests. It also allows the collection of small samples of tissue, which can then be looked at under a microscope to get more information about what may be wrong with you. An endoscope can also be used for certain forms of treatment, such as opening up a narrowing of the oesophagus (gullet), or removing small growths called polyps in the bowel or bladder.
Endoscopies are usually performed in special rooms where all the specialist equipment is set up, and there are usually dedicated members of staff, waiting areas and recovery areas. There are generally quite a few different members of staff, each with a specific job to perform. Typically members of the team include:
- The endoscopist. This is usually a doctor. It could be a consultant or a member of the medical team who is being trained or has completed training in the particular procedure. There are also an increasing number of specialist nurse endoscopists.
- Nurses. There are nearly always two nurses in any endoscopy room. Broadly speaking, one nurse will assist the endoscopist during the procedure and the other will help monitor you and talk to you during the procedure. This is usually very reassuring and calming and will distract you from the procedure.
Due to the nature of the test and the potential risks, you will be asked for your written consent before having one of these procedures. You should be given appropriate information and allowed the opportunity to ask questions before deciding whether you are happy to go ahead. Even if you decide to continue, you are still free to change your mind later and withdraw your consent – even during the procedure if you wish. The consent process is explained in more detail in Chapter 15, as it is an essential part of preparing for an operation or other procedure.
Some patients experience some discomfort during these procedures – which obviously varies depending on the patient and the specific test – but the vast majority of people tolerate endoscopy very well. The range of response is really wide; some patients undergo them with no sedation and no discomfort whatsoever, while others require much larger doses of sedation and pain relief. This is not a question of bravery – simply that for some people it appears very uncomfortable and for others it is relatively straightforward. You can always ask for sedation, even if it is not initially offered (which it may not be routinely for some endoscopic investigations, for example flexible sigmoidoscopy), but this is likely to mean that you need to be in the company of a responsible adult for the next 24 hours and that you cannot drive or operate heavy machinery for 48 hours.
Types of endoscopy
Endoscopy is carried out in different ways, depending on which part of the body is being examined.
Upper gastrointestinal (upper GI) endoscopy
This is one of the most common endoscopic tests. A flexible endoscope is inserted through the mouth, down the oesophagus (gullet) and into the stomach and the first part of the bowel. It is often referred to as a ‘gastroscopy’ or an ‘OGD’ (both of which refer to the parts of the body that it allows the doctor to study). Common reasons for this test being performed include symptoms suggesting a problem with the stomach or gullet – like acid reflux, difficulty or pain swallowing food – or unexplained weight loss or anaemia.
When you have an upper GI endoscopy, you effectively have to swallow the endoscope for it to pass down into your stomach. For this test, you will be asked not to eat or drink for six to eight hours beforehand to ensure your stomach is empty. A local anaesthetic will be sprayed on the back of your throat to reduce any discomfort from the endoscopy tube, and you wear a mouth guard to hold the endoscope away from your teeth. Swallowing the tube can be a little difficult, so you may be offered a sedative to help you relax, although you will still usually be awake throughout the procedure. Here is one patient’s experience.
“I was absolutely dreading having an endoscopy – I was worried that it would be difficult to swallow the endoscope tube and that it would make me retch. I’m a bit of a control freak and find anything like this really difficult. I explained these concerns to the doctor who was going to do the procedure and she was very reassuring. We agreed that I’d have some sedative medication as well as throat spray. She gave me the injection just before doing the procedure – and the next thing I remember is being in another room about half an hour later and it all being done. I honestly can’t remember anything about it. Other than a slightly sore throat, I was completely fine, and I enjoyed a cup of tea and some biscuits before going home with a friend. If I ever have to have another one, I’ll be a lot more relaxed about it!”
Lower gastrointestinal (lower GI) endoscopy
There are two different types of lower gastrointestinal endoscopy – flexible sigmoidoscopy and colonoscopy. Both tests involve the endoscope being inserted through the anus (back passage) and into the colon. The two tests start the same way, but a colonoscopy passes through the entire colon and up into the final stage of the small bowel (called the ileum), whereas a flexible sigmoidoscopy is only used to assess the lower third to half of the colon (the bit nearest the patient’s bottom). Common reasons for these tests being performed include symptoms suggestive of problems with the bowels – like bleeding from the bottom, difficulty with passing stools, weight loss, anaemia, or a strong family history of bowel cancer.
For a lower GI endoscopy, you will often also have some sedation and pain relief, particularly before a colonoscopy; this lasts longer and requires the endoscope to travel further inside you. You also need to have some ‘bowel preparation’, to clean the colon so that the endoscopist can see. To empty the whole colon out normally takes about 48 hours of preparation beforehand, with your diet steadily decreasing from normal solids to clear liquids like water. It also necessitates the taking of some very strong laxatives, which empty the bowel. If you are only undergoing a flexible sigmoidoscopy, though, you usually just have an enema into the rectum on arrival at the hospital; this empties out the bottom half of your colon just before the test.
Other types of endoscopy
A wide range of other endoscopic procedures can be performed. If there is a hole that allows access into the body, there is an instrument to look inside it! Other common forms of endoscopy include:
- Bronchoscopy. This involves looking through the mouth, down into the airways inside the lungs.
- Cystoscopy. This is used to look into the bladder via the urethra (the tube from the bladder to the outside of the body), which opens on the penis in men, and just above the vagina in women.
- Nasendoscopy and laryngoscopy. These involve looking inside the nose or mouth at the vocal cords, with the endoscope being inserted through one or other of the nostrils or the open mouth.
Risks of endoscopy
On the whole, endoscopic tests are incredibly safe. They are performed routinely in large numbers throughout the health service. However, inserting a flexible or rigid tube into a hollow part of the body inevitably involves a small risk of damaging the body and causing a hole. The risk is generally very low; for example, it happens to fewer than one in a thousand people for an upper GI endoscopy or colonoscopy. With certain aspects of the treatment, or for individual patients, the risk of causing a hole may increase. This will be discussed with you in more detail before you are asked to provide consent for the procedure.
If the endoscope damages the wall of the part of the body being examined, or if a biopsy is taken, there may be some bleeding. This is usually minor and of no concern, but there is a small risk that more significant bleeding can occur, depending upon which test is performed and whether or not the endoscope is being used to provide any treatment at the same time. The risk of bleeding is increased slightly if patients take aspirin regularly, and increases more significantly if they take stronger anti-clotting medication such as warfarin or clopidogrel. For these reasons, you may be instructed to stop these medicines before your tests, but this will vary from patient to patient depending on the risks or benefits of doing so. Ask the doctors doing the test before changing any of your normal medication.
Significant complications as a result of endoscopy are very rare, and when they do occur they are usually recognised and resolved quickly. When you leave the endoscopy unit to go home, you will be given advice on what to look out for that may suggest a problem has developed after your test. In the vast majority of cases, any problems are dealt with at the time of the test or immediately afterwards.
If bleeding occurs, the most common approach to dealing with it is simply to monitor the patient carefully and see what happens. If necessary, the endoscopy can be repeated and techniques used via the endoscope to stop the bleeding, such as applying clips. Nearly always, this approach – perhaps with some medicines or blood products too – will stop the problem. If it does not, the next step is usually to ask the interventional radiologists to block the bleeding vessel by performing an angiogram (a special scan of the blood vessels) via a large vein or artery in the patient’s groin. This is less invasive than a full operation and usually enough to deal with the problem.
If a perforation (a small hole) occurs, this can be a serious problem. Sometimes the body may heal itself, requiring nothing more than a period of close observation for the patient. If the problem does not settle down quickly, however, an operation may be required – but, to reiterate, this is a rare occurrence.