Health and Social Care Bill

Memorandum submitted by Cancer Research UK (HS 15)

1. Cancer Research UK is the world’s largest independent organisation dedicated to cancer research; in 2009/10 we spent £334 million on research. Our vision is that ‘Together we will beat cancer’. We carry out world-class research to improve our understanding of cancer and to find out how to prevent, diagnose and treat different types of the disease. Around 300,000 people are diagnosed with cancer in the UK every year. And every year more than 150,000 people die from the disease.


2. Cancer Research UK’s ambition is for the UK to have world class cancer outcomes.

We know that our outcomes currently lag behind the best performing countries in the world, even though we fund world-class research and are responsible for developing many of the innovative treatments that have aided improved cancer survival here and elsewhere in the world.

2.1 We believe the key reason our outcomes are worse than the best is that we often diagnose cancer late in this country, thereby reducing the scope for patients to undergo curative treatment [1] . Up to half of all cancers are lifestyle related, so efforts to reduce smoking prevalence and encourage healthy living remain critical. And we know that not all patients get access to the best treatments for cancer – be that the latest surgical techniques, best radiotherapy treatments or most effective cancer drugs – so work must continue to provide world class treatments for all.

2.2 We also know that the commissioning of cancer services is not as good as it could or should be, and that information about the quality of cancer services that would aid commissioning is not being fully utilised by the health service [2] .

2.3 We welcomed the recently published cancer strategy, Improving Outcomes: A Strategy for Cancer, which proposes actions across the patient pathway to improve services [3] . Many service improvements will also deliver increased efficiency savings for the NHS. We will be monitoring implementation closely. We are mindful that the broader health service reforms could have a profound impact on cancer services. We urge the Government to monitor the transition period closely to ensure that services do not suffer as reorganisation takes place.

2.4 We are also aware that there will be significant financial constraints on the NHS alongside the reforms. This could impact on the availability and quality of cancer services. It is vital that services continue to deliver improvements in treatment for patients in a system of changing responsibilities where significant efficiency savings are being made. We are particularly concerned about public health services, and the consequent impact on cancer prevention efforts and activities to promote the early diagnosis of cancer.

2.5 There is also potential for unintended consequences of the legislation with the ensuing decentralisation of power to GP-led consortia. A number of centrally funded and administered initiatives have successfully encouraged innovation in cancer treatment and have raised the quality of treatment in recent years. For example, the LAPCO initiative – a national programme to train surgeons in using laparoscopic techniques for bowel cancer – was set up by the National Cancer Action Team and has been vital in reducing unacceptable inequalities in access to the latest surgical techniques [4] . It is important that initiatives of this type are supported in the evolving NHS. We urge the Government to guard against this good practice being lost.

2.6 Below we highlight seven key concerns that we would like raised at Committee Stage of the Health and Social Care Bill.


Part 1: The Health Service in England

Section 19 The NHS Commissioning Board: further provision; Section 22 Commissioning consortia: general duties.

3. Ongoing support for cancer research is critical to underpin improvements in cancer services, and, ultimately, outcomes. We know that patients treated in research-active environments do better, and that the UK has led the way in increasing the number of cancer patients involved in clinical trials [5] . Research conducted in the NHS has supported many breakthroughs in cancer treatment and service design. Our view is that support for, and the promotion of, research on the NHS must be safeguarded as a consequence of the reforms.

3.1 Under Section 19 of the Bill, a number of clauses are inserted into the National Health Service Act 2006. Clauses 13H and 13I of the Bill place a duty on the NHS Commissioning Board to promote innovation and research, together with the use in the health service of evidence obtained from research. We welcome the continued emphasis placed on the need to promote research at this level, but would like more detail about how this will be applied in practice.

3.2 We would like confirmation that a senior ‘research champion’ such as the Director General of Research and Development for the Department of Health will sit on the NHS Commissioning Board to ensure that research is promoted within the NHS.

3.3 The Academy of Medical Sciences recently published a report recommending urgent action to remove existing barriers to clinical research in the UK [6] . We believe it is essential that these are adopted by the Government and integrated with the broader health reforms as appropriate.

3.4 Excess treatment costs (ETCs) for research studies are currently covered by PCT commissioning budgets, but the mechanisms in place for Trusts to claim for these costs are not clear or consistent, disincentivising many Trusts from seeking to recover them. The opportunity should be taken to resolve this issue as soon as possible alongside the changes, so that Trusts are not further disincentivised from undertaking research during a period of significant change. We also need clarity about how ETCs will be channelled to Trusts in the absence of PCTs.


Part 1: The Health Service in England

Section 19 The NHS Commissioning Board: further provision; Section 22 Commissioning consortia: general duties.

4. Commissioning for cancer is complex. There are over 200 types of the disease and the average GP will only see eight or nine new cases of cancer per year. Much work has been undertaken in recent years to improve the quality of cancer commissioning. Commissioning expertise to support cancer commissioning has been built up in many cancer networks. Commissioners require information about what an excellent service looks like and the current quality of different cancer services if they are to commission effectively. In addition, commissioners benefit from advice about appropriate levels at which to commission certain services.

4.1 Under Sections 19 and 22 of the Bill, clauses 13G and 14O will be inserted into the National Health Service Act 2006 which refer to the duty of the NHS Commissioning Board and GP-led consortia to obtain appropriate advice in commissioning services.

4.2 Our key concern with the move to GP-led commissioning is that some of the expertise which has been developed to support cancer commissioners could be lost.

4.3 Whilst it is welcome that central DH funding for cancer networks has been secured for 2011/12, we would like reassurance that the support of experts will be sought by commissioners through the transition to new commissioning arrangements and beyond.

4.4 Good practice guidelines will no doubt encourage GP-led consortia to ‘buy in’ appropriate support for cancer commissioning, but we are concerned by conversations we have had with GPs where they highlight that a) finances will be tight and b) there will be no compulsion to use this expertise and that GPs with a special interest in cancer will potentially be more likely to utilise their own expertise and buy in support than others.

4.5 In monitoring cancer outcomes, it is important that a number of proxy measures are used in addition to the Outcomes Frameworks. If only 5 year relative survival data are assessed, the impact of a change in service or provision of treatment will not be evident for many years. The NHS Outcomes Framework and Improving Outcomes: A Strategy for Cancer [7] support the recording of 1 year survival data and we believe that this measure will be a significant indicator of the effects of the NHS reforms on cancer outcomes.

Public Health

Part 1: The Health Service

Section 7 The Secretary of State’s duty as to protection of public health; Section 8 Duties as to improvement of public health; Section 18 Exercise of public health functions of the Secretary of State; Section 26 Appointment of directors of public health; Section 27 Exercise of public health functions of local authorities

Part 2: Further Provision about Public Health

Section 50 Co-operation with bodies exercising functions in relation to public health

5. Cancer is a complex condition and a cancer patient will require the support of different aspects of the health service throughout their treatment and care. For example, health professionals offer individuals’ support to aid cancer prevention efforts. GPs are in the main responsible for the quick and accurate referral to secondary care when cancer is suspected. Secondary care will be mostly responsible for the diagnosis and treatment of cancer. The social care system will help support cancer survivors and those with terminal disease.

5.1 We are concerned that the reform programme will risk fragmenting cancer services, at least in the short term. We would like the Government to commit to working hard to guard against this. With the potential loss of cancer networks in their current form, it is vital that expertise in coordinating learning, disseminating initiatives and ensuring non-duplication of effort is maintained in some form.

5.2 Secondly, with the creation of Public Health England as distinct from the NHS, there is a risk that efforts to improve the early diagnosis of cancer will be fragmented. Public Health England and local authorities will take primary responsibility for cancer prevention, raising awareness of the signs and symptoms of cancer amongst the general public and encouraging people to seek help from a health professional if they suspect cancer. The NHS, via GPs and others in primary care, will have primary responsibility for referring patients appropriately where they suspect cancer and supporting those living with cancer, and, via clinicians, for diagnosing and treating cancer.

5.3 Currently, GPs have working relationships with public health specialists at PCTs, giving them access to information about local initiatives in health promotion and prevention. The loss of PCTs and the delivery of these services by local authorities could potentially weaken this link, particularly in the short term. It takes time to build relationships across organisations and teams who often have very different professional backgrounds. There is a danger that joint working will suffer as existing health organisations are being abolished and new ones set up. It is vital that the delivery of public health initiatives do not suffer whilst relationships between GPs and local authorities are being built.

5.4 We believe that Public Health England and the NHS need to work very closely to drive improvements in the earlier diagnosis of cancer. Our concern is that this will not happen unless both parts of the service are jointly incentivised to promote early diagnosis. We would like assurances that this will be taken seriously and closely monitored.

Patient and service user involvement

Part 1: The Health Service in England

Section 22 Commissioning consortia: general duties etc.

Part 5: Public involvement and local government

Section 168 Activities relating to local care services

6. Patients’ and service users’ involvement in the design of cancer services is critical to securing improvements. The Bill sets out how the NHS Commissioning Board will champion patient and carer involvement and the Secretary of State will hold the Board to account for progress. The Bill describes how the new NHS Commissioning Board will champion patient and carer involvement, and the Secretary of State will hold the board to account for progress. In the meantime, the Department will work with patients, carers and professional groups, to bring forward proposals about transforming care through shared decision-making. Under Section 22 of the Bill, inserting clause 14N into the National Health Service Act 2006 will impose a duty for commissioning consortia to promote patient involvement. Under Section 19 the insertion of Clause 13L will impose similar responsibilities on the NHS Commissioning Board.

6.1 User group involvement has been an important feature of many cancer networks. By facilitating partnerships between service users and service providers, the networks have created valuable channels of communication and feedback. It is important that these channels are not lost through reforms.

6.2 The Bill is not clear about whether it will be mandatory for patient/public representatives to sit on the NHS Commissioning Board and the Boards of GP-led consortia. We would like clarity on this point and assurances that cancer patients and service users will have a powerful voice as the reforms are implemented and beyond.

6.3 The Health and Wellbeing Boards will be critical in bringing health bodies together with a duty to encourage integrated working. The Boards will include representatives from GP-led consortia, local authorities and Local Healthwatch organisations. It is important that the Health and Wellbeing Boards represent the needs of cancer patients by measuring the burden of cancer at a local level and that this is reflected in Joint Strategic Needs Assessments.


Part 1: The Health Service in England

Section 3 The Secretary of State’s duty as to reducing inequalities; Section 19 The NHS Commissioning Board: further provision; Section 21 Commissioning consortia: establishment etc.

7. The Secretary of State, the NHS Commissioning Board and commissioning consortia will all have duties to reduce inequalities in access to services and in health outcomes. Under Sections 19 and 21, clauses 13F and 14N are inserted into the Health Services Act 2006 respectively, requiring commissioning consortia and the NHS Commissioning Board a duty to reduce inequalities in both access and outcomes.

7.1 Significant inequalities exist in cancer – certain groups are more likely to develop certain cancers, inequalities exist in access to the best treatments and even among those cancers where incidence is higher among wealthier socioeconomic groups, death rates are higher among deprived communities [8] . Our concern is that with less oversight from the centre and the opportunity for greater divergence at the local level, inequalities may widen. We would like urgent reassurances that this will be closely monitored and appropriate action taken if evidence suggests inequalities are widening.

Quality Standards

Part 8: The National Institute for Health and Care Excellence

Section 218 Quality Standards

8. The role of cancer Quality Standards alongside NICE clinical guidelines and Improving Outcomes Guidance (IOG) needs to be clarified. Section 218 outlines the process of preparation of Quality Standards. There is no clear message about how they will sit alongside current guidance.

8.1 Much guidance exists that highlights best practice for cancer treatment and care. This is crucial to support service improvement. We are concerned that Quality Standards may not have the same status as NICE guidelines and that this could compromise care. We are also concerned about the time it will take to develop Quality Standards across the whole cancer pathway, and if it is clear enough to the clinical community that they should continue to meet NICE and other service improvement guidance in the meantime.

8.2 We would like clarification on the status of Quality Standards and how it is envisaged they will apply to cancer services.

Information Revolution

Chapter 9: The Health and Social Care Information Centre

Section 234 Powers to publish information standards; Section 246 Assessment of quality of information; Section 247  Power to establish accreditation scheme.

9. There is a clear distinction between information about cancer and information about cancer services and their performance to inform service selection. High quality information about cancer services provides a basis for better decision-making – for patients and commissioners - and more effective monitoring of performance. Poor quality information can lead to inefficiency and waste, poor performance, and result in unnecessary costs.

9.1 Great hopes are being placed on information as a powerful lever to drive system change as the health service is reformed. We need more and better data for cancer commissioners, patients and the public to help drive cancer service improvement. Sections 246 and 247 of the Bill lay out the necessity for high quality information. These will need to apply to information across the board for use by commissioners, clinicians, patients and the public.

February 2011

[1] The Lancet (2010). Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995-2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data.

[2] National Audit Office (2010). Delivering the Cancer Reform Strategy London: HM Stationery Office.

[3] Department of Health (2011). Improving Outcomes: A Strategy for Cancer.

[4] ibid

[5] International Journal of Gynecololgical Cancer 2005. Pattern of care and impact of participation in clinical studies on the outcome in ovarian cancer.

[6] Academy of Medical Sciences (2011). A new pathway for the regulation and governance of medical research.

[7] Department of Health (2011). Improving Outcomes: A Strategy for Cancer.

[8] National Audit Office (2010). Delivering the Cancer Reform Strategy London: HM Stationery Office.