An acquired brain injury can be life changing with many of those affected facing a potential lifetime of disability. An acquired brain injury is one that is not congenital and occurs either at or at any time after birth.
It can be categorised into two broad groups: ‘traumatic’, normally sustained by a blow to the head as a result of, for instance, a car accident, fall from height, a sporting injury or an assault; and ‘non-traumatic’, an injury that occurs as a result of something internal in the brain, for example, a mismanaged birth, tumour or stroke.
In this guide we cover the most common types of brain injury, their cause, medical diagnosis, and the range of treatments and rehabilitation available. Very occasionally these injuries are caused by negligence, or made worse by negligent treatment, so we also explain what happens if you believe that the treatment you received has fallen short of what you expect, including how to raise concerns and the process of making a medical negligence claim. However, please note that this guide specifically excludes genetic causes of brain function impairment.
Non-traumatic brain injuries
Birth-related brain injuries
In 2015, the then Secretary of State for Health, Jeremy Hunt, announced the National Maternity Ambition to reduce all birth-related deaths and brain injuries by 20% by 2020 and 50% by 2030.
This ambition prompted the Department of Health to commission Imperial College’s Neonatal Data Analysis Unit to provide annual estimates relating to the incidence and severity of conditions leading to neonatal brain injuries, and to appoint a group of experts who were asked to come up with a ‘pragmatic working definition for brain injuries occurring during or soon after birth’.
The result was that the group concluded that the following conditions fell into this category: neonatal seizures, intracranial haemorrhage (including intraventricular/periventricular haemorrhage), perinatal/neonatal stroke, hypoxic-ischaemic encephalopathy (HIE), central nervous system infection, bilirubin encephalopathy and, among preterm infants only, cystic periventricular leukomalacia.
Before examining some of these conditions in more detail, including diagnosis and treatment, it is worth emphasising that developing an acquired brain injury at birth is thankfully rare – indeed, the research outlined above concluded that, on average, only 0.41% of babies born in 2019 suffered a brain injury at birth, a figure that has remained fairly constant since 2012. The government, in partnership with the NHS, continues to work on a number of initiatives to bring this figure down further.
Hypoxic-Ischaemic Encephalopathy (HIE)
Sometimes known as birth asphyxia, HIE is the most common cause of brain injury at birth, occurring in 983 out of 560,765 births in 2019. The principal cause of HIE is oxygen deprivation during the birth and, although HIE can affect every organ, the brain is especially susceptible to harm. Symptoms of HIE can include being hyper-alert, irritability, eye rolling or having abnormal movements (fits). Babies may also have a reduced level of awareness. HIE can be caused by a number of factors:
- Incorrect placement of vacuum or forceps in an assisted delivery;
- Umbilical cord wrapped around the baby’s neck;
- Dislodged placenta;
- The baby becomes stuck in the birth canal;
- Baby does not start independent breathing quickly enough following birth;
- Fetal monitoring issues;
- Pre-eclampsia (problems with the mothers blood pressure);
- Maternal infection;
- Premature birth;
- Delay in acting on a pathological CTG finding.
Treatment
The level of injury sustained is graded from mild, moderate to severe which will dictate the treatment pathway. Babies diagnosed with mild HIE will be monitored but may not need treatment and may make a full recovery. A baby diagnosed with moderate to severe HIE is likely to be transferred to a neonatal intensive care unit (NICU) for Neo-natal Therapeutic Hypothermia or ‘cooling’, one the most effective specialist treatments to be employed immediately after birth. ‘Cooling’ lowers a baby’s body temperature from 37 degrees to 33.5 degrees to aid the healing process of the baby’s brain over a three-day period. Following the cooling treatment, the baby will be subject to further tests to assess the extent of the damage while remaining in a specialist baby unit.
Some babies with HIE recover fully with no long term complications; others may need ongoing support. Any prognosis will depend on the extent of the damage, where it occurred and what treatment was received.
Neo-natal seizures
There are several causes of neonatal seizures (fits), including intracranial haemorrhage and meningitis, but HIE is the most common. Most neo-natal seizures normally occur within the first 36 hours of birth and manifest by unusual eye and mouth movements, changes in blood pressure and heart rate, increased salivation, and jerky body movements.
Some of these symptoms are difficult to detect by observation alone so babies suspected of suffering from fits will be monitored by a ‘cerebral function monitor’ (CFM) which records brain activity. Babies may need to be put on a ventilator to help them breathe; alternatively, those whose breathing is less laboured can be helped by a CPAP (continuous positive airway pressure) which helps to keeps the baby’s lungs inflated.
Treatment
As well as help with breathing, babies suspected of suffering from fits may also have a head / cranial ultrasound to show any bleeding or if a stroke has occurred as well as other problems associated with HIE. An MRI (magnetic resonance imaging) scan can also help to assess the extent of any brain damage and provide information on how the brain is maturing. Depending on the severity of injury, a baby’s development will be monitored to assess progress.
Intracranial haemorrhage
A bleed into the brain can be caused by birth trauma, including incorrect use of forceps or vacuum extraction. Although assessing the symptoms in babies is difficult, lethargy, difficulty in sucking or feeding, seizures and vomiting can all indicate the presence of intracranial haemorrhage. Both CT scans and MRIs can help to ascertain whether a bleed has occurred and its severity. A severe haemorrhage can cause intellectual impairments and cerebral palsy.
Treatment
Surgery may be required if the bleed is serious.
Cerebral palsy
Cerebral palsy affects movement and co-ordination and can arise as a result of brain damage at birth caused by HIE, an infection including meningitis, intracranial haemorrhage or other less obvious cause. Although the most severe brain damage likely to cause cerebral palsy is often diagnosed at birth, sometimes symptoms will develop later. More serious cases may need long term support from a specialist team of therapists but the level of impairment varies greatly and many people go on to lead independent, economically active lives.
Other (non-birth related) non-traumatic brain injuries
Brain tumour
Symptoms: According to the Brain Tumour Charity, there are over 130 types of brain tumour, some of which are cancerous, others not so. This may seem very worrying but the chances of developing a brain tumour are fairly rare. Although the effects of a tumour will depend partly on where it is located within the brain, the principal symptoms are: persistent severe headaches, changes in vision, seizures, feeling sick and dizzy, fatigue and a loss of taste and smell.
Experiencing any of these symptoms does not mean that a brain tumour is the most likely cause. Nonetheless, if any of these symptoms are persistent or if you are experiencing more than one, it is important to visit your GP armed with a list of your symptoms and questions for the doctor. The Brain Tumour Charity has a helpful checklist of questions that patients can ask. Depending on the GP’s initial assessment, they may refer you to hospital to see a specialist as either an urgent or a non-urgent referral. Neither type of referral means you have a brain tumour – in most cases, such referrals are precautionary. If the GP does not refer you for tests, it is important that you ask them to explain why they do not think it necessary (although they are likely to ask you to monitor your symptoms carefully and return to the surgery if they have not improved).
Diagnosis and treatment
You may see a number of specialists if you are referred such as a neurologist who will check your reflexes, hearing and vision; and an optometrist to check your eyes. If you are referred for additional tests, these may include scans (usually either CT or MRI), biomarker tests (a genetic test) and a biopsy. If the tests are positive, neurosurgery is often carried out in order to remove the tumour followed by a course of chemotherapy and / or radiotherapy.
Stroke
Symptoms
A stroke occurs when the blood supply to your brain is interrupted by a blood clot. Without immediate treatment a stroke has the potential to cause lasting brain damage. There are three types of stroke: ischaemic (the most common); haemorrhagic (bleeding into and around the brain); and transient ischaemic (a mini stroke caused when the blood supply is cut off temporarily).
Strokes can be caused by a number of factors, including age, medical conditions such as high blood pressure or high cholesterol, and factors such as smoking, eating unhealthily and being overweight.
Although you can take pre-emptive measures if you think you might be at risk of stroke, such as checking your blood pressure, cholesterol level and altering your lifestyle, a stroke will normally occur without warning and is a medical emergency so the faster you get to hospital, the better your chances of recovery and the less likely you are suffer long term brain injury. This is why the Stroke Association and the NHS have been raising awareness of symptoms via the FAST acronym which summarises the three most common symptoms:
- Facial weakness
- Arm weakness
- Speech problems
- T is time to call 999.
Other symptoms include eyesight problems, memory loss, headache and weakness or numbness on one side of the body.
Diagnosis and treatment
At hospital a number of tests will be carried out to determine whether or not the symptoms you have experienced are those of stroke. These tests can include a CT or MRI scan, ECG and blood sugar tests. If a stroke is diagnosed, there are different treatments offered depending on the type you suffered. If you had an ischaemic stroke, an antiplatelet, such as aspirin, will be administered in order to disperse the clot. A small number of people are also offered thrombolysis, another process designed to break down blood clots using an alteplase drug. In a small number of cases, surgery may be performed to remove a clot depending on the blood vessel in which it is lodged. Surgery may also be performed if you have suffered an aneurysm. Other treatment will be related to reducing your blood pressure and lowering your cholesterol level. You will also be advised on making lifestyle changes as appropriate.
Traumatic brain injuries
Despite head injuries being the most common cause of death and disability for those aged 1 – 40 according to the NICE guidelines, the number of people who suffer long term brain damage is relatively small. Nonetheless, for those who do suffer catastrophic, irreversible damage, living with the consequences affects not just the individual but also their family and friends.
It is worth noting that research into the long term effects of a brain injury and into new forms of treatment have been given additional impetus by the relatively recent focus on lasting damage sustained by professional players of contact sports, in particular rugby and football, and especially the effects of repeated bouts of concussion. This focus has also led to much stricter guidelines around identification and management of suspected concussion occurring on the pitch.
Treatment
The rehabilitation of an individual whose brain has been damaged by trauma is usually managed by a combination of different therapies, primarily physical and occupational that involve repetitive actions. Although brain cells cannot regenerate, the ability of the brain to adjust after a traumatic event is remarkable as a result of brain ‘plasticity’. This means that other areas of the brain can, with the right therapeutic help, take over some of the function of the damaged cells. The key to successful rehabilitation is repetition: repeated actions help new nerve pathways to develop which can help to overcome some of the disabling effects of the original injury.
Rehabilitation therapies can be delivered in a variety of settings, depending on the severity of the injury. From specialist centres delivering intensive treatment for the most severe, long-term injuries, to outpatient services for less severe injuries and for those making a good recovery, the mode of treatment should always reflect the patient’s needs. How long treatment is required will depend on the injury but recent research has shown that progress can continue many years after the original trauma occurred, rather than being confined to two-year window as previously thought (headway.org.uk).
What to do if you are unhappy with your diagnosis or treatment?
Acquired brain injuries leading to long term damage are rare and, as research increasingly discovers more about how the brain works, diagnosis and treatments improve year on year leading to more optimistic prognoses for many sufferers. There are considerable online resources available outlining the symptoms, diagnosis, treatments and follow up support for all the acquired brain injuries covered in this guide, giving you a good idea of what to expect in the event that you, or a family member, are unlucky enough to suffer one.
Therefore, if you believe that the treatment you or your family member have received is not adequate, it is important that you raise the issue as soon as possible as the earlier you complain, the sooner the problem can be addressed – and it is worth emphasising that raising concerns is not the same as a legal claim.
If a child has been injured as a result of a negligent action, or actions, then a parent, guardian or other responsible adult can pursue a claim on their behalf.
Making a complaint
Every GP practice and hospital has a complaints procedure (which all NHS organisations are required to have under the NHS constitution). The starting point is an informal process which encourages you to raise any concerns verbally with the person in charge of your care. This is often the quickest way to resolve the problem as your concern may be something that can be easily fixed or explained.
If you feel unable to speak to someone directly, you can also feedback your concerns via a feedback form which you can access either via the hospital or GP practice website or by asking a member of staff (often reception) for a copy.
Making a formal complaint
If you feel the informal process is not working, you can trigger a more formal procedure providing you do so within 12 months of the problem occurring or 12 months from when you first became aware of the problem. This timing can be adjusted if there is a good reason. If you are directing your complaint to the hospital, details of the person to whom you need to address your written complaint will be listed in the hospital’s complaints procedure which the hospital is required to produce on request. For a GP practice, you would normally write to the Practice Manager. There are several bodies who can help you with managing a complaint including the Patient Advice and Liaison Service in hospitals and the NHS Complaints Independent Advocacy Service, available via your local authority.
Making a medical negligence claim
If your injury has affected your or a loved one’s life or you feel that your concerns have not been adequately addressed, you may have the basis for a negligence claim but it is worth noting that the evidence bar required for a successful claim is very high.
Time limits: The usual rule is that a legal claim must be brought within either:
- three years of the date of the injury (or death); or
- three years from the date when you knew that a medical error was responsible for the injury/death; or
- For children, the time limit is three years after the child turns 18; or
- If the injury has caused mental incapacity, there is no time limit for the claim.
Please note the different time scale for making a complaint, as explained above.
Establishing your claim
The chances of establishing a successful claim will depend on proving a breach of duty of care occurred and this breach of duty of care caused harm – and this is the basis on which we can advise you whether your claim is sufficiently strong to proceed. Expert medical evidence will be requested from an independent doctor or specialist which will help prove your case. We will assess your claim using three criteria:
- The healthcare provider must be guilty of a ‘breach of duty’. This means that the care you received fell short of what is deemed acceptable (which broadly means that a reasonable body of medical opinion agrees that the action taken was not of the standard expected);
- You were injured or received a worse than expected outcome; and
- The injury or damage caused was as a result of the ‘breach of duty’.
Making your claim
Given the high standard of proof required to determine medical negligence, many claims do not succeed. However, of those that do succeed, the majority settle before reaching court. However, there is a legal process to be followed which may, but usually doesn’t, end in a court hearing:
- Pre-action protocol: After taking full instruction from you, obtaining copies of your medical records and commissioning expert medical evidence, a Letter of Claim sent to the Defendant (the person or organisation against whom the claim is being made) sets out the allegations of negligence. The Defendant must reply (a Letter of Response) within four months. This reply will decide whether or not to instigate court proceedings.
- Court proceedings: A claim is issued (legal documentation setting out your case is placed with the Court) in either the High Court or County Court. The procedure follows a path laid down by the Court rules and requires exchange of your evidence which will include a statement from you and expert medical evidence.
- Trial: Once the evidence has been assessed and the parties have negotiated on the issues involved, the claim can go to trial which should take place within 12 to 18 months of the claim being first issued. The judge will decide at this stage if your claim will succeed or not.
- Personal representative / Litigation Friend: You can bring a claim on behalf of a family member if they are a minor, unable to represent themselves or deceased.
Valuing your claim
The value of your claim will depend on a number of issues including pain, suffering, loss of earnings and likely future losses (such as care requirements). Your compensation will be made up of ‘general’ damages relating to pain, suffering and loss of enjoyment of life and ‘special’ damages relating to past and future financial loss, such as loss of wages and the cost of care. We can advise you on how your compensation is likely to be assessed.
Compensation for a child will be put into trust for them to access once they turn 18. The court can authorise the release of funds for necessary purposes such as specialist treatment or education.
Next steps
It is crucial to record as many details about the medical treatment you received and that you can remember and the effect your injuries have had on your everyday life. In addition:
- Keep all relevant documents
- Record all related expenses
- Keep a ‘care’ diary to record the time either that you spend looking after a family member who is the victim of clinical negligence or that family members spend looking after you
Early Notification Scheme
This scheme was set up in 2017 specifically to support families whose baby has suffered an otherwise avoidable brain injury following a mismanaged labour and / or birth. Under the scheme, it is compulsory for Trusts to notify NHS Resolution within 30 days of the birth of any baby diagnosed with a severe brain injury within the first 7 days of their life as a result of a mistake made at their birth. Any claim must be made within 18 months of the injury.
The scheme is designed to provide families with:
- A detailed explanation of what happened.
- An apology.
- A recommendation to seek independent representation where an entitlement to compensation has been identified.
- Prompt financial support to help with equipment, therapies and, in some cases, accommodation.
- Psychological support.
Summary
There are many excellent, dedicated doctors who regularly make judgments based on their experience; very occasionally they will make a wrong call resulting in a tragic outcome. But this does not mean that they will face a negligence claim – in most cases there will be no case to answer because a reasonable body of medical opinion will concur that they would have made a similar decision. Where negligence claims will succeed is where the reasonable body of medical opinion agrees that the action taken was not of the standard expected.
Taking a claim forward as a patient takes stamina and perseverance. In my experience, people will only come to me as a last resort – and I will only take on their claim if it has merit: more than 85% of our initial enquiries from patients unfortunately cannot be progressed (and these in turn represent a very small minority of patients who have been treated). When it comes to medical mistakes negligence is rarely the reason for making a wrong decision. However, where there has been a clear failure to follow accepted procedures and negligence is a factor, there is an established process to follow.
If you have any concerns about any aspect of your treatment, I am happy to have an initial discussion to see whether or not we can help.
