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CANCER OF UNKNOWN PRIMARY FOUNDATION

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Understanding the NHS structures and systems

The most radical changes to the treatment of CUP patients started with the NICE Guideline on CUP in 2010; the most radical changes to the NHS, since it came into being, took place in April 2013. The present organisation is captured here. Some patients and carers will wish to know the detail; others will not. For some carers, helping to steer their loved one through the system, it may be useful to have some background information and to recognise the language used. Healthcare professionals may find parts of this page a useful source of information.  You may find the Cancer Services User Involvement Jargon Buster (March 2013) useful as you read!

 

Your rights to choice in the NHS

‘No decison about me, without me’ is now a guiding principal in the NHS and ‘Choice’ is an important aspect. ‘The NHS belongs to the people’ is the strapline for the NHS Constitution which is an important guiding document.

 

The treatment model

Cancer treatment in general

For over a decade, cancer treatment in England and Wales has been directed by The NHS Cancer Plan (2000). This strategy covers the whole care pathway – from prevention, through early detection and treatment, to end of life care. It was supplemented by the Cancer Reform Strategy of 2007. This in turn has been “refreshed” by the Coalition Government who introduced Improving Outcomes: a Strategy for Cancer in January 2011.

How the NHS should manage CUP patients in England and Wales

The appropriate organization of care for patients with Malignancy of Undefined primary Origin (MUO)/Cancer of Unknown Primary (CUP) is defined in detail in the National Cancer Peer Review Programme Manual for Cancer Services.  The key principle is that, since the introduction of the NICE Guideline on CUP in 2010, MUO/CUP should have the same basic service infrastructure as  site specific cancers: multidisciplinary teams, network site specific groups (NSSGs), various related hospital services and the cancer network.

The bullet points below are adapted from Osborne, Richard. Cancer of Unknown Primary (CUP) in  Young A, Clark PI, Selby P, editors. Problem Solving in Acute Oncology. 1st ed. Oxford: Clinical Publishing; 2014.

The main organisational requirements are:

  • A ‘CUP Team’ to advise on, and supervise appropriate investigation and subsequent management, according to the guidelines in NICE CG104. The team should comprise a consultant oncologist with expertise in MUO/CUP, a palliative medicine consultant, and a designated cancer nurse specialist (CNS).
  • The CUP team will, with other colleagues in radiology and pathology, along with necessary administrative support, undertake traditional multidisciplinary team (MDT) functions.
  • The team will meet weekly to review all new patients and to ensure the necessary input is available to deliver comprehensive care for each individual.
  • Where patients are admitted to hospitals without resident oncologists or oncology beds the newly presenting patient with MUO will usually remain under the care of the admitting (non-oncology) consultant initially, with the CUP team exercising an advisory role.
  • The necessity for prompt expert oncological advice, attention to symptomatic needs, and holistic support cannot be overemphasized. (The ability to enter a generic process for investigation is expected to significantly benefit patients who would otherwise spend unacceptable amounts of time being investigated inappropriately by site-specific clinicians. However, it is important to recognize that these developments place novel demands on some oncologists whose proficiency in frontline diagnosis may not be fully developed. It is anticipated that the emergence of acute oncology as a subspecialty in oncology will largely overcome this problem.)
  • A full range of network-level functions (in common with the arrangements for known-site cancers) should underpin high quality care. The CUP site-specific group (SSG) is essential to ensuring that this relatively common condition is accorded appropriate investment in terms of clinical and support resources. Additionally, for this neglected disease complex, the establishment and maintenance of explicit management guidelines and the delivery of ancillary functions, such as audit and research, is an obvious need.
  • The precise arrangements for SSG working can be organized to suit the requirements of different networks. So long as the essential duties are conducted, it may be that some organizations will link the CUP SSG with another established SSG whilst ensuring the highest-quality CUP service.

The patient benefits from hospital CUP teams are significant but the uptake by hospitals of the NICE Guideline remains patchy.

The treatment model for all cancer patients in the NHS

The NHS treatment model is based on cancer care being delivered in specific, designated cancer centres and cancer units (and occasionally at home) by co-ordinated services in partnership with each other. Cancer units, often units of District General Hospitals, are usually where people are diagnosed and cancer is confirmed and the patient is then referred to an oncologist or the specialist CUP Team which includes an oncologist. Staff here will have strong links with the oncology centre. Oncologists may go out from the centres to see people in the units. More complex treatments or rarer cancers may go to the cancer centres where there is a higher level of expertise. Some cancer units have their own chemotherapy suites. The cancer centre may be a large hospital or a university teaching hospital with facilities for radiotherapy, chemotherapy and with links to palliative care. Not all cancer centres do surgery and the specialist cancer surgery may be done at the cancer units (Usually by a surgeon who specialises in cancer surgical procedures.) Satellite services, where non complex treatment may be delivered, can offer treatment in patient’s homes.

New NHS

From April 2013 the new NHS ‘health and care system’ became operational.  At the heart of the new system are the local health and care services – GP surgeries, home care, hospitals and care homes. As well as providing patient care, in the new system, doctors, nurses and other professionals will use their knowledge of local health needs to commission the best available services to meet them. They will do this by joining together to form Clinical Commissioning Groups (CCGs). CCGs will have the freedom to commission services for their local community from any service provider which meets NHS standards and costs.

Health and Wellbeing Boards in every area will ensure that services work together and are responsive to communities’ needs and priorities. Local Healthwatch will give patients and communities a voice in decisions which affect them, reporting into Healthwatch England, a new national body to represent the views of the public at the highest level.   A new organisation, Public Health England, provides national leadership and expert services, to support public health and work with local government and the NHS to respond to emergencies.

NHS services nationally are supported by the new NHS Commissioning Board (NHS CB). It funds local CCGs to commission services for their communities and ensure that they do this effectively. Some specialist services will continue to be commissioned by the NHS CB centrally where this is most efficient. Health trusts will continue to manage hospital care and community and mental health services, with all trusts becoming Foundation Trusts to benefit from greater independence to manage their own services. A new NHS Trust Development Authority will support NHS Trusts to improve.   A new organisation, Health Education England is charged to make sure the healthcare workforce has the right skills and training to improve the care patients receive. It supports a network of Local Education and Training Boards (LETBs) that will plan education and training of the workforce to meet local and national needs.

The National Institute for Health and Care Excellence (NICE) provides guidance to help health and social care professionals deliver the best possible care based on the best available evidence.  The National Institute for Health Research (NIHR) and its clinical research networks form a health research system in which the NHS supports outstanding individuals, working in world class facilities, conducting leading edge research focused on the needs of patients and the public. The Health and Social Care Information Centre will collect, analyse and publish national data and statistical information and will deliver national IT systems and services to support health and care providers.

The Care Quality Commission (CQC) will assess the quality and safety of services against government standards through its registration, regulation and monitoring of services, ensuring that people are treated with dignity and respect. Healthwatch will give patients and communities a voice in decisions which affect them, reporting their views, experiences and concerns to Healthwatch England. Healthwatch England will work as part of the CQC.   As the sector regulator, Monitor’s main duty will be to protect and promote patients’ interests by creating incentives, providing information and enforcing rules where necessary. Licensing providers of health care will be one of the main tools Monitor will use to do this.   The Health Research Authority (HRA) will work to protect and promote the interests of patients and the public in health research. The Medicines and Healthcare Products Regulatory Agency (MHRA) will continue to make sure that medicines and medical devices work and are safe to use. The Human Tissue Authority (HTA) regulates human tissue, such as donated organs, to ensure it is used safely and ethically, and with proper consent.

Click here for a visual image of the stakeholders and here for a comparison with the system before Apr 2013: NHS Architecture