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Accessing The Right Care

Choosing the right medical team

Once your GP, or another medical professional, suspects you have a liver problem, they will usually refer you to a liver specialist doctor called a hepatologist. Alternatively you may be referred to a gastroenterologist (a doctor who specialises in diseases relating to the digestive tract) with a liver specialism. In some cases, you might be referred directly to a specialist liver nurse or an infectious diseases specialist.

Patients have the right to choose which hospital or healthcare provider their GP refers them to. This is a very important decision, as it will determine which team of healthcare professionals look after you, the equipment they have, the wards you might have to stay on and the facilities that will be available.

"Make sure you are sent to the appropriate consultant by your GP, and find out what lifestyle changes you can make to help with your liver disease.” Linda, Berks.

"Many people out there want to help; dedicated doctors and nurses who deal with the medical and mental issues you may have.” 
Phil, Hants.

You may want to consider the following:

  • Does the hospital have a dedicated liver unit?
  • How many specialist liver consultants are there at the hospital?
  • How complex or rare is your liver condition?
  • How far is the hospital from friends and family?
  • Can you be treated at the hospital where you are already receiving care for another condition?

Hospitals with a dedicated liver unit will have the greatest concentration of liver specialist knowledge and may be particularly suitable for patients with rare or complex conditions, or those with advanced liver disease. They see large numbers of patients with different types of liver disease and build up considerable expertise in treating them. They often have a medical team including doctors, specialist liver nurses and others, such as dieticians and pharmacists with liver expertise. We can advise you which hospitals have specialist liver units near you.

Even if you are being treated in hospital, your GP is a very important member of your medical team. When you are discharged by the hospital, your GP is responsible for your care. It is important to have regular appointments with your GP to monitor your condition – ask for these if they are not offered. Make sure your GP is aware of any treatment you have received in hospital and speak to them if you develop any new symptoms or are having difficulty with lifestyle changes.

Many patients benefit from an excellent long-term relationship with their GP. If you have questions or concerns about what is happening to you or want more information, often your GP can help to explain things. If you do not have a good relationship with your GP, you have the right to find a new one. Don’t be afraid to say how you feel or ask to see another GP at the surgery who may be more sympathetic to you. The NHS Choices website gives details on how to change your GP ( www.nhs.uk).

Being assessed

When you are referred to hospital, usually the first step is specialist assessment of the health of your liver. This is very important to determine how much liver damage you have experienced (referred to as ‘staging’ your liver disease) and to decide what treatment is most appropriate for you.

You are likely to have regular blood tests to monitor your condition. You can ask for copies of the computer print outs of these results, and keep these safe so that you can track your condition.

Understanding your own liver condition will help you live your daily life.” Judith, Birmingham.

Getting the most out of your doctor’s appointment

Before each appointment with your doctor, it is a good idea to prepare by:  

  • thinking of all the questions you have 
  • thinking about the symptoms you’ve experienced (include what might seem like minor things, such as itching, nose-bleeds, change in your stool colour, swelling, sleepiness and twitching) 
  • thinking about what information you want from your doctor 
  • writing these down so that you can give a copy to your doctor.

During the appointment:

  • tell the doctor how you feel. Don’t be afraid to say what you think is causing problems or making things worse 
  • if you can, take along a friend or relative who can listen and take notes of what the doctor says, and perhaps remind you of any points you would like to raise 
  • check your list at the end of the appointment to make sure that you have covered all the points 
  • if anything the doctor says concerns you, if they have not answered all your questions or you do not understand the answers, do not be afraid to ask for more explanations
  • ask your doctor what symptoms you should look out for and what you should do if they occur, for example, whether you should: come back to the hospital as an emergency; adjust your medication; phone the liver unit or make another appointment 
  • find out what happens next, for example, do you need to book another appointment?

You have an important role in looking after yourself between appointments and asking questions will help you to manage your condition better.  

Keeping records

You have a right to a copy of any letters your liver specialist may send to your GP and from your GP to your specialist. You can also request a copy of test results and your prescriptions. It is often useful to file these together with details about your condition, so that you can refer to them later if needed.