Dealing with doctors

Doctors and Consultants

Developing and maintaining good relationships with anyone involved in your care and treatment is very important, especially if your condition requires long-term care.

It is likely that several health professionals will be involved in your care. These may include:

  • Your GP
  • Your specialist (hepatologist, gastroenterologist or infectious diseases consultant)
  • A clinical nurse specialist
  • A pharmacist
  • A dietician

Although all of them may have specific roles in your care and treatment, they are also likely to have shared roles and responsibilities. For example, your specialist and clinical nurse specialist will work closely together, and will relay progress updates to your GP.

Of course it would be unrealistic to assume that all relationships with health professionals are of equal importance. In most cases, the relationships you have with your specialist and clinical nurse specialist are likely to be the most significant.

Try to keep a folder of all the information, letters and test results you have received relating to your health. This will help you to keep track of everything you know about your case so you can get the most out of your interactions with the health professionals in charge of your care.

GP appointments

For most people your General Practitioner is the first person you contact when you are feeling unwell. If your conditions requires specialist knowledge, your GP can refer you to a hospital for tests, consultations and care.
Although your specialist will be responsible for your specialist hepatitis C care, your GP is responsible for your primary care.

Your care needs may change over a long period of time, requiring input from other services. Part of your GP’s role is to ensure that all of your primary health and social care needs are met so they may be involved in referrals to other service providers.

If your GP is likely to be involved in your care, then a good relationship with them is essential.

When considering your relationship with your GP, bear in mind that hepatitis C is still a relatively new illness and as a result the impact it has on people is often not well understood. The best way to ensure your GP is aware of all your medical and social care needs is to be open with them and keep them well informed.

Recognise your GP’s limitations in this area, as long as they are doing everything in their ability to help you and refer you to the right people.

If you feel that the relationship you have with your GP is detrimental to your care, you may want to address this.

GPs are very busy. Appointments are made for specific lengths of time and while your doctor will want to ensure your consultation is useful for you, they will also be conscious that they have other patients waiting for them.

Before your appointment, it is a good idea to think about what you want to discuss with your GP, including the primary reason for the appointment and any other points you want to raise. This will make the appointment more beneficial for you and for your GP.

As well as thinking of the broad points you want to raise, also think of the questions your GP may ask you.

It is a good idea to write every point down and take this into your appointment so you don’t forget to mention anything. The checklist below is useful to help you think about all the possible issues you might want to discuss.

Appointments often result in receiving a lot of information, so it is useful to either have someone with you or to write down everything you are told by your GP. 

Keeping a diary about how you feel, both physically and mentally, can be really useful. You can also record any reaction to medications or other problems you have had.

Checklist

This checklist is designed to assist in keeping your GP appointment focused and to help you get the most out of the time available to you and your GP during your appointment. It is not comprehensive and you will have many of your own questions. Hopefully it will help you to think about how to use your own appointment time as constructively as possible.

Symptoms

  • Have you been experiencing any symptoms?
  • How long have you been experiencing these symptoms?
  • How long do the symptoms last?
  • Are they there all the time or do they come and go?
  • Is there anything that makes them better or worse?

General state of health

  • What is your main concern?
  • Is it one isolated concern or is it connected to something else?
  • Has it affected your ability to work?
  • How is it affecting your everyday life/relationships?

Tests

  • Why are you having the test?
  • Will the test be carried out at the surgery or will it require a hospital visit?
  • How long will you need to wait for results?
  • Who will give you the test results?

Test Results

  • What is the result of the test?
  • What does the result mean?
  • Will the test need to be repeated, if so how regularly?
  • Are further or additional tests necessary?
  • Will treatment be necessary?
  • Will you need to have your care referred to a specialist?

Statement of Fitness for Work (fit note)

  • Why you need the statement, e.g. for your employer, benefits agency, etc?
  • How will the GP explain your condition on the certificate?
  • How long will the certificate be valid?
  • What if you need a repeat certificate?
  • Do you need help or information regarding what to do with the certificate?

Referral

  • Are you seeking a referral for additional or secondary health care, e.g. referral to a specialist?
  • Are you seeking a referral for additional social care? If yes, why do you feel you are in need of these additional services e.g. are you having trouble coping with everyday tasks, such as washing or cooking?

General Advice

  • What is the advice you are seeking?
  • Are you concerned about your general health or a specific aspect of your health?
  • Are you concerned about transmission of hepatitis C?
  • Is there something about your care that you would like some additional information on?

Current Treatment

Are you having difficulty with your current treatment?

Is it a particular aspect of your regimen or is it a general difficulty?

Have you tried to remedy the situation yourself? If yes, has this been successful?

Do you want some additional information about your treatment?

Is there any alternative/complementary treatment that could replace or assist your current treatment?

Hospital Appointments

In most cases, patients are referred by their GP to a specialist. This may be a hepatologist, gastroenterologist or infectious diseases consultant. They will usually be located at a nearby hospital. In some cases your specialist may be some distance away; this varies enormously across the country.

Patients do not have an absolute right to choose the consultant responsible for their case but may be able to use the NHS e-referral system to choose the hospital or clinic at which you will be treated and book your first appointment (http://www.nhs.uk/choiceintheNHS/Yourchoices/appointment-booking/Pages/a...).

Your specialist’s role

Often consultants delegate the task of examining patients to their team, but retain overall responsibility for the care of the patient.

While hepatitis C may be new to you, your specialist is likely to deal with the care of a number of people living with hepatitis C. As a result, they will have a broad knowledge and experience that they can share with you.

Any questions, either specific to your own care or generally related to hepatitis C, can be directed to them. Your specialist will be responsible for referring you for diagnostic tests and procedures, monitoring and assessing your condition and advising appropriate medications and treatment.

You won’t necessarily see your specialist every time you visit hospital. You may have other tests or appointments elsewhere in the hospital that will be discussed later at your consultations.

Your specialist or clinical nurse specialist will usually also make themselves available to your partner or next of kin if they have any concerns. This may be important for those concerned about transmission of hepatitis C.

Relationship with your specialist

As your specialist is central to your hepatitis C care, it is essential to maintain a good relationship with them.
You should be involved in all decisions relating to your care. You have a right to be kept informed as to why certain tests and procedures have been requested.

Getting the most from your specialist

Try to ensure you keep all appointments. If an appointment is made for you which you cannot attend, try to move it as soon as possible but make sure that the specialist you want to see will be there on the new date.
Arrive in good time for appointments.

Before your appointment, it is a good idea to think about what you want to discuss with your specialist, including the primary reason for the appointment and any other points you want to raise. This will make the appointment more beneficial for you and for your specialist.

As well as thinking of the broad points you want to raise, also think of the questions your specialist may ask you.
It is a good idea to write every point down and take this into your appointment so you don’t forget to mention anything. The checklist below is useful to help you think about all the possible issues you might want to discuss.
Appointments often result in receiving a lot of information, so it is useful to either have someone with you or to write down everything you are told by your specialist. 

If you don’t understand something, ask your doctor to explain more clearly or provide you with written information.
Keeping a diary about how you feel, both physically and mentally, can be really useful. You can also record any reaction to medications or other problems you have had.

Checklist

This checklist is designed to assist in keeping your consultation focused and to help you get the most out of the time available to you and your specialist during your appointment. It is not comprehensive and you will have many of your own questions. Hopefully it will help you to think about how to use your own appointment time as constructively as possible.

Information

  • Tell your doctor about any treatments or drugs you are currently taking
  • Tell your doctor about any other conditions you may have~
  • Be honest about your alcohol consumption

Symptoms

  • Have you been experiencing any new symptoms?
  • How long have you had them?
  • Are they there all the time or do they come and go?
  • Is there anything that makes them better or worse?
  • Have you tried any remedies yourself? If yes, what, and have they successful?
  • Have they affected your ability to work?
  • Have they affected your everyday life/relationships?
  • Is there anything they can recommend to relieve the symptoms?
  • Are symptoms an indication of disease progression?

Tests

  • Why are you having the test?
  • Where, when and how will it be carried out?
  • How long will you need to wait for results?
  • Who will give you the test results?

Test results

  • What is the result of the test?
  • What does the result mean?
  • Will the test need to be repeated, if so how regularly?
  • Are further or additional tests necessary?
  • Will treatment be necessary?

Treatment Advice

  • What are your treatment options?
  • Are you having difficulty with your current treatment?
  • Is there a particular aspect of your treatment plan that is causing a problem?
  • Have you tried to remedy the situation yourself? If yes, has this been at all successful?
  • Do you want some additional information about your treatment?
  • Is there any alternative/complementary treatment that could replace or assist your current treatment?
  • Do you want advice about alternative/complementary treatment options?

General Advice

  • Are you concerned about your general health or a specific aspect of your health?
  • Are you having difficulty with your diet or appetite?
  • Are you concerned about transmission of hepatitis C?
  • Is there something about your care that you would like some additional information on?
  • Are you seeking a referral for another specialist, e.g. dietician, physiotherapist?
  • Can your specialist provide your partner/family/friend with some information about hepatitis, its transmission, disease progression and treatment?
  • Does your specialist know of any support agencies?

Problems with Doctors

Regardless of which healthcare professional you are consulting with, you have the right to:

  • Be treated with respect and confidentiality.
  • Have your medical records stored securely.
  • See your medical records on request (see ‘access to records’ page).
  • Be seen immediately for treatment in the case of an emergency.
  • Be fully informed and involved in all aspects of your treatment and care.
  • Have all treatment options and procedures explained fully to you, including the risks and benefits of each option.
  • To request a second opinion (though this may not always be granted).
  • Refuse to take part in medical research or medical student training.
  • To nominate any relative or friend you wish to be kept informed about your condition.
  • To change your doctor or care provider without it affecting your future care.
  • To make a complaint about your treatment without it affecting your future care.

You should not expect

  • To experience discrimination of any form.
  • To be refused access to essential treatment.
  • To have any breach in patient/doctor confidentiality.
  • To be refused access to your medical record.
  • To be subjected to any procedures you do not consent to.
  • To be examined by medical students without your permission.
  • To be given treatment that is inappropriate for you.

Changing your GP

  • If you wish to see a different GP, you may be able to see another GP within your surgery.
  • If you wish to move to a different surgery, you don’t have to inform your doctor of your decision to change. In theory, this should be simple. You can approach any GP practice and ask to be registered. However, GPs are under no obligation to accept anyone for registration. Some GPs will not have any room on their books to register you.
  • If you are staying in another part of the UK for up to a period of three months, you can ask to be registered with another GP on a temporary basis, as long as you know your NHS number.
  • Having an infectious disease should not make any difference to registering with a GP. You are under no obligation to disclose any of your previous or current medical conditions prior to registration.
  • If you have a problem registering with another GP, your local Clinical Commissioning Group (CCG) has to find you a doctor. If you feel you have been unfairly treated while registering with a GP, you can considering entering into a complaint procedure. 

The complaints process

  • Before making a formal complaint, try to discuss the issue with the doctor or member of staff and resolve it informally. This is known as ‘local resolution’.
  • If you don’t feel that you can resolve the problem informally, you can complain in writing to the service provider, whether it is your GP’s surgery or your hospital.
  • Every NHS organisation has a complaints process. Your local Clinical Commissioning Group (CCG) should be able to advise you who to contact.
  • NHS England is responsible for GPs so formal complaints about them should be emailed to them (england.contactus@nhs.net) with the subject line ‘For the attention of the complaints manager’.
  • Include as much information as possible in your written complaint. You should state your name and contact details, a description of the complaint and details of any relevant service providers.
  • For advice or support, PALS (Patient Advice and Liaison Service) can help you through the complaints procedure. The Hepatitis C Trust also offers an Advocacy Service. Call the helpline on 0845 223 4424 or email helpline@hepctrust.org.uk

  • You should receive the finding of their investigation and any apology.

Parliamentary and Health Service Ombudsman

If you are not satisfied with the outcome of your complaint, you can contact the Parliamentary and Health Service Ombudsman – a service which is independent of the NHS and government.

The Ombudsman can be contacted on 0345 015 4033 or on their website.

The Ombudsman also features a list of things to think when making a complaint.

Access to records

  • You may be able to informally view your medical records during a consultation. Nothing in the laws prevents health professionals from informally showing you your own records. However, copies of records are only supplied if a formal application for access has been made.
  • The Data Protection Act (1998) gives every living person or their authorized representative the right to apply for access to their health records to obtain copies irrespective of when they were compiled.
  • This applies to digital and manually written information including handwritten clinical notes, letters to and from other health professionals, laboratory reports, radiographs and other imaging records e.g. X-rays and printouts from monitoring equipment, photographs, videos and tape recordings of telephone conversations.
  • To make a request you need to apply in writing or by email to the holder of your records, i.e. a GP or hospital. You do not need to give any reasons for your request. Access is possible to both NHS and private medical records.
    The Act also gives people who now live abroad, but formerly lived in UK, the right to apply for access to their records.
  • Requests should be met within 40 days, although government guidance says healthcare organisations should aim to respond within 21 days.
  • There is also a guidance document called Access to Health Records Act 1990 aimed at providing advice on the procedure of accessing records.  

Medical reports for insurance or employers

Under the Access to Medical Reports Act (1988), an employer or insurance company may not apply to your doctor for a medical report about you without first notifying you and informing you of your rights under the Act.

You have a right to see the report before it is sent and you can request a copy. If you believe the report is inaccurate of misleading you can ask the doctor to amend it. If this is refused you can ask for a statement of your views to be attached to the report. A copy of the report should be kept by the doctor for up to six months.

Fitness to work (‘fit note’)

  • You may be able to acquire a ‘fit note’ from the doctor who is treating you. It can be a GP or a specialist. It must be signed by a doctor, although it is doesn’t matter whether it is handwritten or typed.
  • Ultimately a ‘fit note’ is advice from a doctor and your employer can choose whether or not to accept. However, if your employer does not accept it you can contact ACAS, an organisation which resolves employment disputes.
  • If your doctor doesn’t ask you how your condition affects your ability to work, raise it yourself.
  • Your doctor will assess your fitness to work by considering how your condition affects what you can do at work. You may either be judged as not fit to work or fit to work taking account of medical advice.
  • If you are given a ‘fit note’, it is your property. Your employer can take a copy, but you should keep the original.
  • The government has recently launched a programme called Fit for Work which attempts to return people to work more quickly. You may be referred to this programme by your doctor depending on the length of time you are unable to work.
  • There is more information here, in the Department for Work & Pensions’ guide for patients and employees.