Helpline 0800 169 2409 Email: [email protected] Accessing Mesothelioma Treatment and Care Introduction England, Scotland, Northern Ireland and Wales have developed different structures for managing their respective National Health Services. The Mesothelioma Framework applies only to those people living in England. However comparable care standards are delivered across the UK. In England the NHS has developed National Service Frameworks (NSFs) to cover some of the highest priority conditions such as cancer. NSFs have two main roles; they set clear quality requirements for care based on the best available evidence and offer strategies and support to help organisations achieve these. In addition, England is geographically divided into networks for cancer care. Each cancer network includes GPs, hospitals and health service commissioners. Getting care right for people with cancer is crucial and the first NSF for cancer was called the NHS Cancer Plan. Published in 2000 it set out the first ever national strategy to organise and rejuvenate cancer services in England. Its success has been built upon by the Cancer Reform Strategy published in 2007, which outlines the direction for cancer services for the next five years. You can learn more about Cancer Networks, the NHS Cancer Plan and the Cancer Reform Strategy from the Department of Health www.dh.gov.uk or telephone 020 7210 4850. The National Institute for Health and Clinical Excellence (NICE)* has developed guidance for the NHS on the drugs and services most likely to improve outcomes for cancer patients. There is insufficient research evidence for NICE to prepare guidance specifically for Mesothelioma however there are many generic guidance documents applicable to all cancers including Mesothelioma. You can learn more about the guidance documents from NICE www.nice.org.uk or telephone 020 7067 5800. * In Scotland this role is fulfilled by the Scottish Medicines Consortium www.scottishmedicines.org.uk. The Mesothelioma Framework Despite there being insufficient research evidence for NICE to prepare Mesothelioma specific guidance, it is imperative that Mesothelioma patients are diagnosed as early as possible. They then can be offered the most appropriate treatment, have access to best symptom management and be offered appropriate information or advice. The Department of Health developed a Mesothelioma Framework based on advice from members of the Lung Cancer and Mesothelioma Advisory Group and from the British Thoracic Society. Page 1 of 4 © Mesothelioma UK June 2010 Helpline 0800 169 2409 Email: [email protected] The framework aims to provide all healthcare providers with advice on how to organise services for Mesothelioma patients in order to improve quality of care to a uniformly high level across the country. Uptake of the framework is not mandatory but it is hoped that all providers will work towards its implementation. The framework recommends that each cancer network should have a lead doctor and a lead nurse and includes advice on configuration of services, raising awareness, clinical management and underpinning programmes such as information, research and audit. You can obtain a copy or read the full version of the Mesothelioma Framework on www.dh.gov.uk or telephone 020 7210 4850. Configuration of Services All patients suspected of having Mesothelioma or with confirmed Mesothelioma should have their case discussed by a Lung Multi-Disciplinary Team (LMDT). Members of the LMDT include respiratory doctors, oncologists (radiotherapy and chemotherapy), thoracic (chest) surgeons, specialist nurses, palliative care doctors, pathologists, radiology (x-ray) doctors and a team of administrative staff. Based on x-rays, scans and biopsy reports the LMDT should confirm the diagnosis of Mesothelioma where possible. Where there is difficulty confirming a diagnosis or where a patient may be considered suitable for a broad range of treatments or clinical trials the patient should be referred to a Specialist Multi-Disciplinary Team (SMDT). The SMDT discusses 25+ Mesothelioma cases per year and advises smaller less experienced LMDTs. The SMDT members are the same as the LMDT except each member will have a specialist interest in Mesothelioma. Doctors referring to the SMDT should be informed when the patient is being discussed and invited to attend. The SMDT should review all pathology, x-rays and scans and make recommendations for the patient’s management, encouraging recruitment to national trials where possible. The patient remains the responsibility of the LMDT doctor referring the case to the SMDT. Raising Awareness Raising awareness within the Mesothelioma Framework focuses on early diagnosis rather than warning against the dangers of exposure to asbestos. Two target audiences are considered, the general public and GPs. Cancer Networks in areas associated with asbestos related industries are encouraged to run local initiatives to maintain a high level of suspicion of asbestos related disease amongst GPs. Clinical Management The framework seeks to address a number of organisational issues relating to diagnosis and treatment. Page 2 of 4 © Mesothelioma UK June 2010 Helpline 0800 169 2409 Email: [email protected] Diagnosis: • Rapid access lung cancer clinics should accept referrals for suspected Mesothelioma. • All LMDTs should have access to ultrasound/C.T. guided pleural biopsy and medical or surgical thoracoscopy. • Each network should have a protocol for the management of pleural effusions. • SMDT pathologists should review the biopsies of all cases discussed and have access to a national pathology reference panel. Treatment • The LMDT and SMDT should consider treatment and care options before a plan is discussed and agreed with the patient. • Wherever possible entry into clinical trials is explored with the patient. • Cancer Network and oncologist discussion should identify the most appropriate location to administer chemotherapy. Underpinning Programmes The Role of Clinical Nurse Specialists (CNS) The Framework recommends every patient be allocated a “keyworker” to support and guide them through the various stages of treatment and care. This is likely to be a “Clinical Nurse Specialist”, who is a nurse with special expertise in supporting people with cancer and their families. She/he will continue as the main contact. Your Clinical Nurse Specialist will help you understand your condition and the treatment options available to you. She/he will also be available to discuss any concerns you have. They should be able to provide you with the information you and your family need and answer any questions you have throughout the duration of your illness. Your Clinical Nurse Specialist will attend the LMDT meetings with the other health professionals who will discuss your treatment options and recommendations. She/he will also work with the other healthcare professionals providing your treatment. They will make sure that referrals between services occur at the right time and that the services you receive are appropriate for you. If you do not know your local CNS, Mesothelioma UK can put you in contact with them. The Framework recommends that clinical nurse specialists have a 'Mesothelioma Patient Information Pack' available. This should include information about: • • • • the disease local NHS services and treatment options possible benefits and compensation sources of further advice and support. Page 3 of 4 © Mesothelioma UK June 2010 Helpline 0800 169 2409 Email: [email protected] Supportive and Palliative Care The framework recommends that referral pathways and communication between your LMDT and palliative care services should be clear. In addition palliative care and symptom control should be central to any management plan. Follow-up Appointments The framework does not contain recommendations for follow-up appointments and care. There is a variation in how often and who patients see for follow-up care which allows patients and their healthcare team to negotiate a schedule that is suitable for the individual. Follow-up care may be provided by the G.P., community palliative care nurses, district nurses, a hospital or hospice based consultant, a nurse specialist or a combination of these. All patients and their carers should be advised about signs, symptoms and issues to monitor for and be aware of how to gain timely access to their healthcare team. MESOTHELIOMA UK PROVIDES SPECIALIST, IMPARTIAL, UP TO DATE SUPPORT AND INFORMATION This information has been prepared for Mesothelioma UK by the Mesothelioma Nurse Action Team:Author: Liz Darlison, Leicester Date: June 2010 Download Mesothelioma UK information from www.mesothelioma.uk.com or to request a copy tel: 0800 169 2409 or . email [email protected] To sponsor or donate to Mesothelioma UK contact: The Mesothelioma UK Charitable Trust:[email protected] Freephone:- 0800 169 2409 c/o The University Hospitals of Leicester NHS Trust, Glenfield Hospital, Hospital Management Offices, Groby Road, Leicester LE3 9QP Page 4 of 4 © Mesothelioma UK June 2010