Sometimes your GP may refer you to a specialist. A visit to a specialist is known as secondary care and can only be arranged through your GP.
Depending on your symptoms, you may meet a number of healthcare professionals, including physiotherapists, occupational therapists, clinical psychologists or other mental health professionals, nurses and dieticians.
NHS specialists are usually based in hospital outpatient departments. The specialty of the consultant (eg. immunologist) is less important than their knowledge, experience and understanding of M.E.
Your referral may not be to your nearest hospital and there may be a waiting list.
Your GP should send any relevant test results and other related information with your referral letter.
You might find it helpful to prepare for the appointment by writing a simple summary of what has happened to you medically. This can be particularly helpful if your story is complicated and will be a useful prompt for you. A list of your main symptoms and how they affect you; an outline of your current level of activity and of your main concerns can help to focus discussion and make best use of the available time.
It is important to have a record of any other health professionals you have seen or are seeing. Also a list of the medication you are taking currently and in the past, the dose and whether you have felt any benefit or experienced side effects.
It is also a good idea to ensure that the specialist is aware of any complementary therapies you are using or have tried.
To reduce stress and minimise the delayed fatigue that can so often be experienced with M.E. try to allow plenty of time for the journey to your hospital appointment. It is also important to allow yourself time to rest afterwards.
It is often helpful to be accompanied, for some or all of the appointment, by a carer or friend. They can help provide additional information or perspective during the consultation if needed. They can also make notes of any key points discussed during the appointment.
The specialist will make a full assessment of your situation, leading to a diagnosis and management plan, including how this will be achieved and what the initial timescale and goals will be. This will be given as advice to you in person and in a letter to your GP.
The plan may include advice on managing physical and mental activity, lifestyle changes and adjustment and coping. The details will depend on individual circumstances.
The specialist may discuss treatments. This may be medication or the use of other approaches that can help alleviate symptoms such as pain, sleep disturbance, mood disturbance, gut symptoms, dizziness, etc.
If medication is suggested, this may be prescribed at the appointment or recommended to your GP for you to try later.
The specialist may discuss the necessity of a referral to another specialist or professional for some specific aspect of your symptoms or condition. This could involve professionals such as physiotherapists, occupational therapists, dieticians, social workers, counsellors or clinical psychologists.
Depending on the nature of the problem and the best options for treatment, any further referrals might not be conducted at the same hospital and there may be a waiting period for the first visit.
If you do see another professional they will assess you and then plan further visits if necessary. They will also keep your GP and specialist updated.
If issues about benefits, employment and/or education need to be addressed, the specialist may be able to write letters in support, if appropriate.
The specialist will decide with you and your GP the most appropriate medical supervision and follow-up arrangements.
Your GP will be the main person for supervising your ongoing care and will normally be the first point of contact for any problems that arise.
Please remember that if you see a specialist privately it is important that they keep your GP and any NHS specialist informed so that your treatment is managed effectively.