NCPC CANCER GROUP SUBMISSION TO THE PALLIATIVE CARE FUNDING REVIEW ON THE ROLE OF REHABILITATION IN PALLIATIVE CARE, MARCH 2011

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1 NCPC CANCER GROUP SUBMISSION TO THE PALLIATIVE CARE FUNDING REVIEW ON THE ROLE OF REHABILITATION IN PALLIATIVE CARE, MARCH INTRODUCTION In October 2010, NCPC submitted an initial response to the palliative care funding review. This response focused on the importance of defining dedicated palliative care in the first instance, followed by a process of identifying the most common dedicated palliative care needs of people and their carers, determination of the services best able to meet those needs - and subsequent development of a standard service specification. (As service specifications will help address the question of which aspects of care provided by a non specialist palliative care service should be funded under the mechanism proposed by this review.) The NCPC submission highlighted the fact that the starting point for defining dedicated palliative care should be the needs of the person or people receiving the care, rather than the services delivering it. NCPC proposed a definition of dedicated palliative care. The NCPC Cancer Group supports the earlier NCPC response, and aims to augment this submission by focusing on the essential need to incorporate rehabilitation as a core component of dedicated palliative care and within the final definition of dedicated palliative care. A list of the members of the NCPC cancer group is included at the end of this submission. While this group and consequently, this submission, have a focus on cancer, we believe the importance of rehabilitation applies to people approaching the end of life regardless of their primary diagnosis and should be recognised by the Review accordingly. 1 1 See for example, Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care: Concise Guidelines, NCPC, British Society of Rehabilitation Medicine, RCP,

2 2. CANCER/PALLIATIVE REHABILITATION 2.1 Overview of Rehabilitation in Cancer/Palliative Care The clinical developments that have occurred in the field of cancer now mean that many people may be cured of their disease or live longer. Macmillan Cancer Support (2008) report that there are approximately 2 million people living with cancer in the United Kingdom. Acreman et al (2008) report that a significant proportion of these individuals have early and, more significantly, late effects from the treatments which compromise functional ability, quality of life and independence. The lived experience of an illness such as cancer or an advanced, progressive disease with all the uncertainty it brings leads not only to changes to a physical body but also to many other changes in a person s life. These needs demand attention in a responsive and timely manner. In meeting the needs of the whole person, rehabilitation and supportive care must be available for all individuals living with cancer and progressive, deteriorating conditions. Cancer/Palliative rehabilitation focuses on maximising physical, psychological, social and vocational functioning during and after treatment. In addition, rehabilitation supports the individual and their families through periods of change to ensure that optimal quality of life and sense of wellbeing is achieved. The experts in provision of cancer/palliative rehabilitation are Allied Health Professionals AHPs (Occupational Therapists, Physiotherapists, Dietitians, Speech and Language Therapists, and Lymphoedema Therapists). However, all multidisciplinary team members, along with carers and the individual, are active participants in the process. A Macmillan Cancer Support document titled Allied Health Professionals in Cancer Care: An Evidence Review (2010) reveals that 30% of cancer patients report unmet needs after treatment for cancer which could benefit from additional interventions from allied health professional rehabilitation services during the survivorship stages of their illness. (pg.1). The fact that more and more individuals with cancer are surviving (many with residual impairments and disabilities) lends weight to the importance of receiving rehabilitation from the point of diagnosis to end of life. Integral to cancer /palliative rehabilitation are the following factors (Acreman et al 2008): A focus on patient centred goals which aim to optimise independence, improve quality of life and mood, ameliorate symptoms, maximise wellbeing, and facilitate an individual remaining in their preferred place of care A multidisciplinary approach across organisations to promote continuity of care Continual assessment of an individual s needs and strengths Forward planning anticipating the needs of the individual The ability to react quickly to changing needs 2

3 Supporting individuals and their families through periods of transition Assisting in dealing with issues such as a reduction in ability and preparing for end of life. Swift and timely access to equipment and resources Competent and confident staff Patient/carer education 2.2 National Drivers Evidence of service users unmet holistic needs is provided in the results of the 2010 Cancer Patient Experience survey. With regards to home support, 40% of patients felt that they did not have sufficient support and care after leaving hospital. Only 58% of patients said that they or their family members had the information they required to be supported/cared for at home, and 61% stated that hospital and community clinicians worked well together. The Improving Outcomes: A Strategy for Cancer (2011) document highlights the fact that provision of coordinated care improves the outcomes for patients. Integral within these plans are the aims to support a personalised approach to living with cancer, enhancing quality of life, and providing support to assist survivors to live as healthy a life as possible, for as long as possible. Rehabilitation is an essential element of this whole person approach In 2004, NICE published Improving Supportive and Palliative Care for Adults with Cancer. Chapter ten of this document addresses rehabilitation and the role of allied health professionals (AHPs). It outlines a recommended model of rehabilitation services and advises that rehabilitation services should be available throughout a cancer pathway. It recommended a 4- tier model and advised that rehabilitation services be organised to ensure that a range of practitioner expertise is available across a cancer network, and that commissioners/providers ensure availability of a comprehensive service. Rehabilitation peer review measures based on the NICE recommendations were published in 2008 and Cancer Network compliance against these measures is in the process of being peer reviewed for the first time ( peer review cycle). 2.3 Pathway Approach To support implementation of the peer review measures for rehabilitation, the National Cancer Action Team (NCAT) created the Cancer Rehabilitation Workforce Project. This project is focused on the development of evidence based rehabilitation care pathways based on the most common tumour sites and symptoms. Each pathway defines the level of practitioner expertise required at each intervention stage and aims ultimately to produce nationally recognised workforce formulae for AHP cancer rehabilitation services. We support national pieces of work which are currently being conducted to integrate rehabilitation into tumour site-specific, long term conditions, and neurological pathways as this 3

4 will effectively standardise and improve service provision due to enhanced co-ordination between services and will promote local reviews of service configuration to establish that patients are receiving the right level of rehabilitation by an appropriately skilled therapist. As stated in the NCPC submission (2010), any future funding mechanisms must also be able to follow the person along their whole pathway and make costings for that whole pathway, including social care. Rehabilitation must be included in the broader care pathway not contracted as a separate package as this risks fragmentation in care. 3. DEFINITION: DEDICATED PALLIATIVE CARE We propose the following definition (based on that proposed by the NCPC submission) but which includes rehabilitation as an integral tenet: Care which enables people with progressive, and/or life threatening conditions or who are approaching the end of life to live according to their wishes and preferences wherever possible. The management of pain and other symptoms of non curable conditions and provision of psychological, rehabilitation, social and spiritual support is paramount. It includes support for the person to plan their future care in anticipation of changing needs/further deterioration and support for the person s family and loved ones. Dedicated palliative care can be provided in any setting. It is not time bound but may be provided at any stage of the person s care pathway and that of their carer(s). Sharon Cavanagh Macmillan AHP lead North Central London & West Essex Cancer Commissioning Network On behalf of the NCPC cancer group (see Appendix) 4

5 References and Supporting Information Acreman, S., Ainsworth, K., Dowling, D., Cavanagh, S., Perris, C. (2008) Developing Practice in Cancer Rehabilitation. European Journal of Cancer Care Online Education Forum. Accessed on 25/02/11. Department of Health [DH] (2011) Improving Outcomes: A Strategy for Cancer. London: Department of Health Department of Health [DH] (2007). Cancer Reform Strategy. London: Department of Health Department of Health [DH] (2010). Delivering the Cancer Reform Strategy. London: Department of Health Department of Health [DH] (2008) Delivering care closer to home: meeting the challenge. London: Department of Health Department of Health [DH] (2008). End of Life Care Strategy: promoting high quality care for all adults at the end of life. London: Department of Health Department of Health [DH] (2000). The NHS Cancer Plan: a plan for investment, a plan for reform. London: Department of Health. Department of Health [DH] (2010). National Cancer Patient Experience Survey Programme 2010 National Survey Report. London: Department of Health Department of Health [DH] White Paper, (2010) Liberating the NHS. London: Department of Health Macmillan Cancer Support (2010) Allied Health Professionals in Cancer Care: An Evidence Review. impact National Cancer Action Team (2008). Manual for Cancer Services 2008: Rehabilitation Measures National Council for Palliative Care (2010) Palliative Care Funding Review Submission to interim report: Dedicated palliative care A Definition National Institute for Clinical Excellence [NICE] (2004). Improving Supportive and Palliative Care for Adults with Cancer. London: National Institute for Clinical Excellence. 5

6 Appendix Members of the NCPC cancer group, March 2011 Name Role Organisation Kate Heaps Chief Executive (chair of NCPC cancer group) Greenwich and Bexley Cottage Hospice Sharon Cavanagh Macmillan AHP Lead North Central London & West Essex Cancer Commissioning Network Jonathan Ellis Director of Public Policy & Help the Hospices Parliamentary Affairs Alison Hill Nurse Director SW London Cancer Network Blanche Jones Public Affairs & Policy Manager Sue Ryder Helen King Head of Strategic Workforce NHS North of Tyne Planning, Patient Safety Team Elspeth Macdonald Network Manager East Midlands Cancer Network Chantal Meystre Consultant in Palliative Medicine Heart of England Foundation Trust Katrina Poulson Director of Nursing & Education Compton Hospice Helen Rainbow Senior Policy Analyst Macmillan Cancer Support Stafford Scholes Person with experience Alastair Smith Consultant Haemotologist & Southampton University Hospitals Honorary Senior Lecturer NHS Trust Jackie Turnpenney Rehabilitation Lead National Cancer Action Team Michael Warren Hospice Trustee St John's Hospice Lancaster 6