Myeloma Best Practice Standards

1.1 Myeloma patients are treated by consultants, clinical nurse specialists, other nursing
staff, and allied health professionals with experience in treating myeloma. Myeloma
patients should have local access to:

• Radiology
• Clinical oncology
• Supportive and palliative care
• Psychological support services
• A 24-hour acute oncology/haematology helpline
• Physiotherapy and occupational therapy
• Dietetics
• Dental service
• Social services
• Critical care
• Clinical trials

1.2 Myeloma patients should have regional access to:

• Radiotherapy
• Facilities for intensive chemotherapy and transplantation
• Therapeutic apheresis
• Renal support
• Spinal disease management
• Specialist pain management
• Restorative dentistry and oral surgery

1.3 Myeloma patients have access to a named clinical nurse specialist who they are
introduced to at the beginning of their treatment and care.

1.4 There is a local multidisciplinary team (MDT) which discusses myeloma patients at
key stages and when complications and/or side effects require an MDT decision.
There is a regional MDT that meets regularly to discuss protocols, new treatments,
research and clinical trials, and challenging cases.

1.5 The haematology department holds regular operational meetings to discuss and
develop the myeloma service, taking into account myeloma patient feedback.

1.6 The myeloma service is equally accessible to, and supportive of, all people who
use it (regardless of age, ethnic background, sexual orientation, disability or social
circumstances)

2.1 Myeloma patients have timely access to investigations, including whole body imaging
and genetic testing, for diagnosis, risk stratification and treatment planning.
2.2 When patients are given their myeloma diagnosis:

• They are encouraged to be accompanied by a family member, friend or carer
• The environment is confidential with no interruptions
• A CNS is present and able to provide information, support and contact
  details afterwards
• They are informed of their diagnosis in a way they can understand
• They can ask questions immediately and at a later date
• Treatment options are explained in a way they can understand (if required)
• They receive information to refer back to
• Their GP is informed within 24 hours

2.3 Patients with precursor conditions are managed according to relevant guidelines
and offered appropriate information and psychological support.

2.4 Patients with related conditions, including AL amyloidosis, are managed according to
relevant guidelines and offered appropriate information and psychological support.

2.5 A database is used at diagnosis and subsequent relapse to record route of diagnosis,
staging, treatment, complications, progression free survival and overall survival.

3.1 Myeloma patients have regular access to a specific named haematology consultant for clinic appointments. When patients see other healthcare professionals in clinic the professional is familiar with the patient’s case.

3.2 Appointments are coordinated to reduce the number of hospital visits.

3.3 Myeloma patients are seen in person on a regular basis to ensure symptoms, side
effects and complications are appropriately managed.

3.4 Myeloma patients are seen in clinic, on the day unit and at the pharmacy
in a timely manner.

3.5 Effective communication exists with other specialist teams with whom the myeloma
patient has contact, including:

• Renal
• Cardiology
• Spinal/orthopaedics
• Neurology
• Ophthalmology
• Acute oncology
• Maxillofacial/oral surgery
• Palliative care

4.1 Myeloma patients are involved and supported in shared decision making, taking account of available treatment options, risks and benefits of treatment, individual circumstances and preferred setting of care.

4.2 Myeloma patients have time to consider the treatment options available to them, taking account of the constraints of any urgent clinical needs. They have the opportunity to seek more than one opinion about their diagnosis and treatment options.

4.3 Individualised information and support is provided to help myeloma patients understand and adhere to treatment schedules.

4.4 There is an appropriate pathway in place for stem cell transplantation and follow up care, which includes any shared care arrangements.

4.5 Following completion of a course of treatment, myeloma patients have an end of treatment summary and assessment of their recovery and rehabilitation needs, including monitoring for late effects.

5.1 Myeloma patients are informed about potential disease symptoms and treatment side-effects in a way they can understand.

5.2 When on treatment, myeloma patients are informed about which symptoms to report urgently and have the contact details for ‘out of hours’ advice and support, including what to do in an emergency.

5.3 Myeloma patients are screened regularly, using a recognised tool where recommended, for myeloma symptoms and treatment side effects.

5.4 Symptom management includes particular attention to:

• Bone disease and pain
• Peripheral neuropathy
• Fatigue
• Infection risk
• Steroid-related side effects
• Late effects of treatment

5.5 Myeloma patients, and anyone providing care and support to a myeloma patient, are provided with resources and strategies to help them manage symptoms and side effects.

6.1 Myeloma patients’ physical, practical, social, spiritual, financial and information needs are listened to, assessed and documented at key stages. These stages include diagnosis, start/during/end of treatment, relapse, and end-of-life.

6.2 Support is tailored to differing and individual needs of all myeloma patients. Available support services are discussed, followed by appropriate signposting and referral to a comprehensive range of relevant NHS, social care and other organisations.

6.3 Myeloma patients’ psychological needs are assessed and documented at key stages. These stages include diagnosis, end of treatment, relapse, and end-of-life. Myeloma patients are referred to expert services as needed, ideally to a psycho-oncology service on-site.

6.4 A range of complementary therapies are available for all myeloma patients for physical and psychological support.

6.5 The information needs of myeloma patients and anyone providing care and support to a myeloma patient are met in a range of formats and languages. Myeloma patients are supported by this information to make informed decisions about their own treatment and care.

7.1 The needs of geriatric and frail myeloma patients are appropriately assessed and recorded, including routine use of a recognised frailty tool. Colleagues in pharmacy routinely use deprescribing tools to reduce the risks of polypharmacy in geriatric myeloma patients.

7.2 The concepts and terminology of supportive and palliative care are introduced at an appropriate time after diagnosis. Myeloma patients, and anyone providing care and support to a myeloma patient, are prepared at an early stage for when the benefits of treatments are likely to be outweighed by side-effects and impact on quality of life.

7.3 Myeloma patients and anyone providing care and treatment to a myeloma patient are given clear and accurate information about what to expect as they transition to end of life care.

7.4 Referrals to the palliative care team are proactively made early, to ensure end-of-life care is provided as needed, and in the myeloma patient’s preferred place of care.

7.5 Bereavement support is offered to anyone who has provided care and support to a myeloma patient. There is an opportunity for follow up with the patient’s myeloma team if requested.

8.1 There is a research team on-site who are represented at the myeloma MDT. A dedicated myeloma research nurse regularly joins the myeloma clinic.

8.2 The myeloma service recruits myeloma patients to clinical trials within the Trust or Health Board. There is access to early phase trials and compassionate use programmes, particularly for patients with relapsed disease.

8.3 Clinical trials are routinely discussed for eligible myeloma patients at MDT meetings. All myeloma patients are routinely told about relevant clinical trials on site and in other centres in the UK.

8.4 Effective strategies are in place for trial recruitment and retention, with particular emphasis on recruitment of patients from under-represented groups, including ethnic minorities and older patients.

8.5 Information about the potential risks and benefits of the trial is provided so myeloma patients can make an informed decision about whether or not to participate.

9.1 The myeloma service proactively engages in formal and informal myeloma education of staff across the Trust or Health Board.

9.2 The myeloma service proactively engages in myeloma education of colleagues in primary care, including guidelines for MGUS management and educational events for local GPs. If a patient is diagnosed via A&E, the myeloma team will discuss the diagnostic pathway with primary care colleagues.

9.3 All members of the myeloma service have communication skills and breaking bad news training. They also have appropriate training and experience to engage in conversations about stopping active treatment, end-of-life care and the preferred place of care. All CNSs have attended an advanced communication skills course and are trained in Level Two Psychological Assessment Skills.

9.4 Information resources to refer back to are provided to myeloma patients and those providing care and support to a myeloma patient on the following:

• Diagnosis
• Tests and investigations
• Treatment
• Living with myeloma
• Relapse and remission cycle
• Symptoms of myeloma
• Management of complications and side effects
• Research and clinical trials
• Supportive and palliative care

9.5 Myeloma patients are encouraged to take an active role in the management of
their condition. The myeloma service offers educational events, self-management
programmes, and education on self-care to myeloma patients and those providing
care and support to a myeloma patient.

10.1 Healthcare professionals show care, compassion and respect for patients, their family and those important to them.

10.2 Clinic letters are written to the myeloma patient and copied to the GP, and are sent after every contact.

10.3 Myeloma patients are able to provide feedback on the myeloma service through local and national surveys. Feedback is acted on in a timely manner, used to inform the myeloma service, and shared with patients.

10.4 Myeloma patients are given contact details for and can easily access their:

• Clinical Nurse Specialist(s)
• Cancer support worker, coordinator, navigator or assistant practitioner
• Medical secretaries

10.5 Myeloma patients have access to a local haematology or myeloma support group. The myeloma team actively signpost patients to the support group, and speak at meetings if invited to do so. Other forms of peer support are actively encouraged.

10.6 With the consent of the myeloma patient, those providing care and support are encouraged to attend consultations and participate in treatment discussions. Patient consent for this involvement is reviewed throughout their care.