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