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If you're affected by myeloma
Your treatment and care
Multi-disciplinary team
Your myeloma treatment and care will be coordinated by a medical team led by a consultant haematologist. This medical team (also called the multidisciplinary team (MDT)) should involve a range of healthcare professionals and is likely to include a myeloma or haematology nurse specialist, a radiotherapist, an orthopaedic surgeon, a counsellor, a dietician, a physiotherapist and palliative care staff.
Your relationship with your medical team
Your relationship with your medical team will involve trust and collaboration. You should feel comfortable asking questions and discussing treatment options with them. Learning more about myeloma and the different treatments available will help you to communicate more easily with your medical team and help you to make informed decisions about your treatment and care, should you wish to do so. Any treatment decision should ideally be reached together.
Tips for getting the most out of your appointment with your doctor
- Carry paper and a pen with you and write down questions when they occur to you
- Give your doctor a list of the questions you have written down at the beginning of your consultation
- Consider taking someone with you to your appointments, both as moral support and for an extra ‘listening ear’
- Don’t be afraid to ask for extra time to make a decision about treatment: you may want to discuss things with family and friends first
- Always tell your doctor if you are taking any medicines you bought over the counter (without a prescription) or if you are using any supplements or complementary therapies
- Tell your doctor if you are experiencing any side-effects of treatment or new symptoms
Guidelines on the diagnosis, treatment and management of myeloma
The UK Myeloma Forum (UKMF), on behalf of the British Committee for Standards in Haematology (BCSH), has drawn up guidelines on the diagnosis, treatment and management of myeloma. The guidelines aim to improve the treatment and care of myeloma patients in the UK by setting standards for the treatment and support that myeloma patients should receive on the NHS. Doctors and other healthcare professionals involved in treating patients with myeloma should be familiar with the guidelines and should use them to direct the way myeloma is managed.
These guidelines have been funded via a Myeloma UK Educational Grant to the UKMF.
More than one opinion
Myeloma is a relatively rare and complex cancer and choosing the right treatment can sometimes be as challenging for doctors as it is for patients. You may feel that you want more than one opinion for peace of mind but also to be sure that the diagnosis is correct, that the treatment plan is appropriate for your situation and that all other options have been considered.
While you do not have an automatic right, consultants are normally happy to arrange for another opinion and you should not feel that asking for one will offend them or the medical team. You may, however, find it easier to approach your GP to arrange a second opinion.
Making a complaint
If you think that the treatment and care you are receiving are not meeting the right standard, or you are unhappy with something that is happening, then you should discuss this initially with your doctor. You may feel uncomfortable doing this, but your doctor cannot deal with your concern if they do not know about it.
If you feel you are not getting a satisfactory answer from your doctor and feel you have grounds for a complaint, your hospital will have a procedure in place for dealing with such complaints. When making a complaint you should be made aware of the complaints procedure of the hospital. This will give you an idea of what is required of you and how your complaint will be dealt with.
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