Living With Liver Disease
Liver disease is complex, varied and fluctuates, meaning that no one person’s experience of liver disease is the same as another. Your experience of liver problems may vary from day to day. This is partly because the liver has a huge number of functions and so liver failure can affect almost every part of your body and the way you feel.
Treat every day in as positive a manner as you can. Don’t ask yourself ‘Why me?’ as you cannot change the past.
Phil, patient from Hampshire
Most people learn they have a liver problem from their GP, often as a result of routine blood tests. Liver Function Tests (LFTS) may often show abnormalities, so your doctor should look at other symptoms and test results before reaching a diagnosis.
It is quite common for the GP to ask you to return in a few months for a repeat test after an abnormal LFT. It is essential that you do follow-up or request a repeat test. Many treatments for liver disease are more effective if the problem is diagnosed early.
Being diagnosed with a liver disease can be upsetting and worrying. It can be comforting to talk to close friends and family. Discussing your condition with people you are close to can help them to understand some of the lifestyle changes you may need to make and allow them to offer support. However, you will want to think carefully before sharing the news more widely. Consider the reactions you may get – are you confident people will be supportive and respect your confidentiality? It is often better to gather more information about your condition and take some time to consider what it means to you and your family, before sharing the news widely.
It is sadly true that people with some medical conditions can suffer discrimination in work or social settings. This can be because some people have preconceived ideas, particularly around alcohol or viral hepatitis. By first understanding your condition yourself you will be able to address any concerns which may be raised.
There are some people you may need to tell so that they can take precautions to protect your health or their own. It is important to tell any medical practitioner about your liver disease before they offer treatment or give you any medications. If you have viral hepatitis, medical practitioners need to know so that they can take additional precautions to prevent cross-infection of other patients. As hepatitis B and C can be transmitted through sex, you have a legal obligation to protect your sexual partners, through practicing safer sex and/or disclosing your status.
Diagnosis of a liver disease may affect your ability to obtain a life insurance policy or a mortgage linked to a life policy, or the premium may increase. If this happens, it is worth talking to your doctor as many consultants are willing to write to a mortgage or insurance company stating your health and life expectancy. Travel insurance may also be more difficult to obtain.It is important that you tell insurance companies about any pre-existing conditions or conditions which develop while you have cover, as this could affect your entitlement if you need to make a claim.Not all insurance companies are the same and so it is worth trying several.
It is best to refer to your company’s policies and guidelines for sickness and disability before deciding whether to tell your employer of your illness. It may be necessary to tell your employer if your condition could pose a risk to other people, for example, if you are a healthcare professional and carry viral hepatitis, or if your symptoms make certain work dangerous, such as operating machinery. Although there are certain legal protections against discrimination, telling your colleagues or your employer may not be necessary or helpful for you. It is important to think carefully before making this decision and perhaps discuss it with your healthcare team.
You may find it helpful to join a British Liver Trust support group at this stage, as other members will be able to share their experiences and give you support.
Understanding your rights
If you have concerns about the medical judgements your doctor has reached, the treatment options they are putting to you or how effective their treatment is, it is usually best to make an appointment and discuss this with the most senior doctor looking after you.
- It is a good idea to take notes of your concerns beforehand.
- Ask a friend, relative or member of staff you trust to be present.
- Let the doctor know how you feel and what your concerns are, being as specific as you can be.
Bear in mind that the vast majority of staff are striving to help you to the best of their ability. There may be very good reasons behind their judgements, but too often there is not enough time for them to explain themselves to patients, leaving patients unnecessarily anxious. If your doctor is not willing to discuss your concerns, or if the relationship breaks down, you should consider seeking a second opinion or lodging a complaint.
It is important to remember that you have the right to make choices about your medical care. Ask the medical team what choices are available and what are the advantages and disadvantages of each option. They will also need to seek your informed consent before giving you any treatment or procedure.
You also have a right to be treated with dignity and respect (and you have obligations to treat staff likewise). If you feel there are shortcomings in the way you have been treated, the hospital environment, or other issues (such as staff not washing their hands), you have a right to raise this. It is often easiest and most effective to simply ask to speak to the nurse in charge if you are a patient on a ward, or the department manager if you are an outpatient. It is usually best to make a complaint as soon as possible after the incident has occurred, while it is still possible to investigate the complaint and gather evidence. There are more details about the complaints procedure below.
If you are concerned about your treatment or are making a complaint, you have a right to access to your medical records and the results of any tests and investigations. Again, it is usually easiest to simply ask to see these rather than take formal action, which can take time and be stressful.
When you make a complaint, it is important to think about what you would like to achieve from it. In many cases, patients would like to:
- alert the hospital/GP practice to something that went wrong and learn from it
- improve procedures in the future
- be provided with a simple apology.
There is a time limit on raising complaints of six months, although this can be extended in some circumstances.
The Patient Advice and Liaison Service (PALS) which is located in each NHS trust, can advise you on how to take your complaint forward or help you to resolve it informally.
If you wish to make a complaint:
- You have to make it first to the hospital or GP practice concerned. You can simply write to the manager, and they will forward it to the person responsible for managing complaints. You should receive a response within a reasonable time period, usually about a month. Most complaints are resolved at this stage.
- If you are not satisfied with this response, you have the option to get back in touch with them or refer it to the Health Service Ombudsman. In Scotland, complaints not resolved locally should be referred directly to the Scottish Public Services Ombudsman. There is also the option of taking legal action through a solicitor.
An independent complaints advocacy service (ICAS) is available to provide advice and support to people who wish to make a formal complaint about the NHS and you can also get advice on complaints from NHS Direct.
The NHS complaints procedure also applies if the NHS has paid for you to be treated privately, and to some aspects of your care if you are in a pay bed in a private hospital. Every private healthcare provider should have their own complaints procedure. There are different procedures in place for complaints about local authority or social services care and there are links in the ‘Who else can help?’ section to organisations that can help.
If you choose to consult a lawyer or start legal action, the NHS may refuse to continue or to start their own investigation, or respond to your complaint.
If your complaint is about the competence or behaviour of a healthcare practitioner, this could be a matter for the professional regulators. NHS Direct can provide the contact details for the relevant healthcare regulator.
People with liver disease can sometimes face stigma or discrimination. It is important to remember:
- there is a large amount of public ignorance about the causes of liver disease – there are over 100, many are genetic, inherited or congenital
- the risks for ‘lifestyle’ related liver disease, whether from alcohol, fatty liver or viral hepatitis, are very common one in three of us drink at levels that put our health at risk, one in five of us is overweight and many people are at risk of blood-borne viruses from unprotected sex or sharing personal items
- it is often a matter of luck which people go on to develop liver disease and which people remain healthy.
People with liver disease have rights. The Disability Discrimination Act protects people under the law with disabilities that have a substantial and long-term negative effect on your ability to carry out normal day-today activities. Long-term means it has lasted at least 12 months or is expected to last at least another 12 months. The impact could be on your ability to get around, ability to lift ordinary objects, on your memory or physical co-ordination.
It is unlawful for your employer to discriminate against you, or treat you or someone close to you less favourably, because of your disability. They have to make ‘reasonable adjustments’ to help you do your job. Public services, shops and entertainment places have to ensure that you have reasonable access to services.
If you need ongoing health and social support after leaving hospital, a multi-disciplinary team, which may include a consultant, doctors, nurses and local social services, will carry out an assessment of your needs.
Local councils each have their own set of ‘eligibility criteria’ for care services and services may incur a charge.
You should be fully involved in the assessment process and informed of the complaints procedure in case you are not happy with the outcome. Most teams will have a social worker who will make sure social services know about any extra support you will need at home. Other specialists may also be part of the team, such as occupational therapists.
If you were receiving services before entering hospital the existing services may simply need reinstating when you leave hospital. You should not be discharged from hospital before the services you need have been arranged.
There are a number of sources of financial support available for patients and carers. It is a good idea to ask about and apply for this support, even if you are not sure whether you are ill enough to qualify, as many people overestimate how ill they have to be to be eligible. Remember to ask your GP or the hospital ward for a medical certificate.
You can also ask the medical team, particularly a specialist nurse or social worker, for advice on completing the forms with information about your condition. Many people with liver disease have unpredictable symptoms and good days and bad days. Try to give as much information as possible about the number of days you have symptoms and how bad you are on your bad days. If they could affect you any day, answer seven days a week.
It is also important to say if your symptoms can deteriorate rapidly. If your condition is severe and there is a chance you might not live for six months, there is a special rapid assessment procedure under ‘Special Rules’ – ask your doctor to instigate this procedure by completing the form.
The names of benefits and eligibility change frequently, so check with the Benefits Enquiry Line, your local Job Centre Plus, Citizen’s Advice Bureau, a social worker attached to the hospital or local council for more information and help with applications.
You may be entitled to one or several of the following:
- Statutory Sick Pay: if you are in work, your employer can pay this for 28 weeks. They may offer you a period on full or part pay instead.
- Disability Living Allowance (DLA): this is paid to help with personal care, whether or not you are in work, if you are under 65. There are several different rates, depending on how severe your disability is. You can also claim a mobility component if you need help getting around.
- Attendance Allowance (AA): if you are over 65, you may be entitled to this allowance which is similar to DLA but has no mobility component. It is tax free and is not usually affected by any savings or income you may have.
- Employment and Support Allowance: this is financial support if you are not working. People who are too ill to work or who have caring responsibilities are entitled to supplements on top of this, and there are different bands of support depending on how disabled you are.
- Carer’s Allowance: this is financial support for your unpaid carer, including your spouse (although they do not need to be related to or live with you), if they are not able to work, or study, because they are looking after you for at least 35 hours a week. They are also entitled to a carer’s assessment from the local council to look at the support they may need.
- Direct Payments: if you have been assessed as having a need for social services, you may be offered a payment to organise care for yourself. You can get information on this from your local council.
There are other benefits that you might be entitled to if you are on a low income, such as free prescriptions, housing benefit, income support, council tax benefit or tax credits. If you experience a sudden drop in your income, for example, if you give up work, you might also be entitled to a tax rebate. It is also worth checking if you have a pension, life assurance or income protection policy, whether they will offer a payout to help financially.
Please also see our Useful Links for information on organisations who may be able to help.
Liver disease can make people feel very fatigued and some people with advanced liver disease can have trouble walking even short distances. If this is your experience, you are entitled to a variety of financial and other support.
- Help with travel to hospital: you can apply for financial help for this, or use a local scheme such as a dial-a-ride service. Ask your hospital for details on what services they offer.
- Disability Living Allowance mobility component: this is paid as part of your DLA (see above) to help with your mobility needs. This is paid at two rates. The lower rate is paid if you can walk but might need some help. The higher rate is paid if you can’t walk, if the effort might be dangerous for you, or if you can’t walk well or beyond a very limited distance.
- Blue Badge parking: this gives you a permit to park in disabled bays and on many yellow lines, or in on-street pay and display parking zones for free. It also gives you exemption from the London congestion charge (you have to register in advance) and from certain road and bridge tolls. You can also use the badge in the EU and some other countries. This is administered by the local authority.
- Road tax exemption: cars used just for disabled people who are in receipt of DLA (higher rate mobility component) can be registered as exempt from vehicle excise duty. You will need to apply for an exemption certificate from the agency that issues your benefit.
- Disability equipment: your local council can help with things like home modifications and walking frames.
- Free local bus travel: if you are disabled and live in England, you can apply for free off-peak bus travel from your local bus pass provider.
- Freedom Pass: in London this scheme gives you free travel on public transport. You can apply from the Post Office or from your local council.
- Disabled person’s railcard: offering you discounts of rail fares after a one-off fee.
It is worth checking with your local council, social worker, Job Centre Plus, Benefit Enquiry Line or Citizen’s Advice Centre that you are getting all the support, both financial and otherwise, that you are entitled to.
Download: Living with liver disease LWLD/01/18
Reviewed by: Dr Toby Delahooke, Consultant Hepatologist, Leicester Royal Infirmary, Phil, B.B., Linda, Judith, Lynda.
Information and support
Please visit the support section of our website for information on support groups in your area. Also our Useful Links section contains information on NHS Services, Benefits and Entitlements, local Liver and Transplant units, and more.