Specialist M.E. services
There are a number of specialist NHS services for M.E. for adults and children, along with consultants working in related settings (eg. pain management), plus the option of private healthcare, with some providers taking NHS referrals.
It is absolutely your decision whether you see a specialist or not.
Within the NHS, the approach offered will almost certainly follow official government guidance on M.E. symptom management. Broadly, this usually means:
- making a full assessment of your situation, including a diagnosis if you don’t have one already
- working with you to draft a symptom-management plan
- offering cognitive behaviour therapy (CBT) and/or graded exercise therapy (GET) with a specialist practitioner (NB. We are raising ongoing concerns about the risks of harm associated with these approaches)
- supporting you to self-manage your symptoms using pacing and energy management approaches, usually with supporting resources
- potentially prescribing medication to help alleviate individual symptoms.
The National Institute of Health and Care Excellent (NICE) is very clear in its guidance on patient-centred care that "good communication between healthcare professionals and people with M.E. is essential. All healthcare professionals should have a high standard of consultation and communication skills and use a consulting style that enables people with M.E. (and their families and/or carers as appropriate) to participate as partners in all decisions about their healthcare, taking fully into account their socioeconomic status, culture, cognitive ability and any specific needs."
Local M.E. support groups can sometimes be a useful starting point to seek out the experiences of others with M.E. who may have attended.
Preparing for your appointment
In 2017, Action for M.E.'s Spotlight on specialist services report found that only around half of all clinical commissioning bodies in the UK commission a specialist service for M.E. So it may take some time to secure a referral, and it may need to be out-of-area if there are no services close to you.
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 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 appointments 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.
Decisions about home visits sit with your GP, and can be particularly important if you are severely affected with M.E.
In reality, home visits can be very difficult to secure. The Coronavirus lockdown over spring and summer 2020 has in some areas meant improved access to telephone and online appointments; it is always worth asking if these are available.