Health and Social Care Bill

Memorandum submitted by Breast Cancer Campaign (HS 64)

1. This submission to the Health and Social Care Bill Committee by Breast Cancer Campaign considers some of the key issues in the proposed reforms affecting breast cancer services and proposes a number of amendments to the Health and Social Care Bill 2011.

1.1 Breast Cancer Campaign welcomes the Government’s intention to improve outcomes in the NHS, empower patients and reduce inequalities. However, this briefing highlights key issues where clarification of the Bill’s proposals would be of benefit to those affected by breast cancer.

These are in relation to:

· How cancer commissioning will improve under the new system

· Deciding which services should be specialised services

· How inequalities can be further tackled to improve outcomes for breast cancer

1.2 This briefing also sets out some suggested amendments to the Bill to:

· Increase the involvement of patients, clinicians and researchers to ensure good quality care and commissioning

· Ensure that the NHS continues to promote research and uses the outcomes from that research

· Ensure that inequalities continue to be tackled

2. Breast cancer and Breast Cancer Campaign: key facts

· Around 48,000 people are diagnosed with breast cancer in the UK every year

· Breast cancer is the most common cancer

· Every year around 12,000 women and 90 men die from breast cancer in the UK [1]

· Five year breast cancer survival rates in England are improving– in the early 1970s they were at 52 per cent but now around 82 per cent of women diagnosed with breast cancer this year will be alive in five years time [2]

· In recent years this improvement in survival rates in England has continued from 77.5 per cent for patients diagnosed 1996-1999, to 82 per cent for those diagnosed in 2001-2006

· Despite this improvement, English breast cancer survival rates lag behind the European average. If breast cancer survival rates are to be amongst the best in Europe then the NHS must continue to support research, adopt the latest treatments, increase uptake of screening, tackle inequalities and improve early diagnosis

· Breast Cancer Campaign specialises in funding innovative world-class research to understand how breast cancer develops, leading to improved diagnosis, treatment, prevention and cure

· Breast Cancer Campaign only funds research into breast cancer and will support research at any centre of excellence in the UK and Ireland

· The charity currently supports around 80 projects, worth around £16 million

3. Commissioning of Cancer Services and Cancer Networks

3.1 Implications of the Bill’s proposals:

· Abolishing Primary Care Trusts (PCTs) and Strategic Health Authorities (SHAs) giving most of their commissioning responsibilities to GP consortia

· PCTs and SHAs previously supported cancer networks, which since 2000 have brought together the experts in cancer care - providers, commissioners, local authorities and the charity sector to help commissioners drive improvements in cancer care

· The Government recognised the importance of cancer networks in the recent Cancer Strategy published in January 2011

· However, the Government has to date only committed to funding Cancer Networks during the transition period. Their future after 2011-2012 is uncertain, although it has been suggested that they may become social enterprises

3.2 What this means for breast cancer:

· Cancer Networks play an important role in co-ordinating services and helping to provide information on local cancer incidence and outcomes to help improve the quality of cancer treatment, and promote the prevention and early detection of cancer

· GPs will need specialist advice if they are to successfully commission complex breast cancer services and ensure that breast cancer outcomes continue to improve

3.3 Key Questions regarding the Bill’s proposals:

· Will the Government commit to ensuring the expertise of Cancer Networks is not lost beyond the transition period, so that GP consortia are supported to commission complex cancer services effectively?

· How will the Government ensure that GP consortia are given the support they need to commission complex cancer services and continue to drive improvements in breast cancer care and survival rates?

4. Inequalities

4.1 What the Bill proposes:

· Placing duties on the Secretary of State, NHS Commissioning Board and GP consortia to reduce health inequalities

· A duty will be placed on the Secretary of State to protect public health, which will include the NHS Breast Screening Programme

4.2 What this means for breast cancer:

· There are significant inequalities in breast cancer. Research has shown that older patients are less likely to receive a range of diagnostic tests and treatments compared with younger patients and evidence suggests that this is based on their age rather than the type of tumour [3]

· We also know that there is significant variation in uptake of screening – from 56 to 84.8 per cent in different regions, and variation between different ethnic groups [4]

· A Department of Health study suggests that if England is to achieve breast cancer survival rates equal to the best in Europe, then breast cancer must be diagnosed earlier. A cost-benefit analysis of improving breast awareness and uptake of breast screening to 100 per cent showed an average cost per life saved of £2,329. This shows that earlier diagnosis of breast cancer would be very cost-effective. [5]

· Breast Cancer Campaign funded research has shown that South Asian women are less likely to visit their GP with breast symptoms than other groups and is also investigating the psychosocial impact of diagnosis amongst Black and Minority Ethnic (BME) women [6]

· BME women have a lower survival rate than white women – a three year survival rate for black women aged 15-64 of 85 per cent compared to 91.4 per cent for white women of the same age [7]

4.3 Key Questions regarding the Bill’s proposals:

· How will these provisions work in practice to ensure that with local variation in services there is not a growth of unacceptable variations in inequalities?

· Will the duties to tackle inequality also include tackling inequalities in uptake of services?

· Will the Secretary of State ensure that inequalities in the uptake of breast screening continue to be addressed?

5. Designating which services are specialised: case study - Radiotherapy

5.1 What the Bill proposes:

· The Secretary of State has the power to require that certain specialised services are commissioned by the NHS Commissioning Board where appropriate

· Other secondary health services will be commissioned by GP consortia

· It is not yet clear if radiotherapy will be defined as a ‘specialised service’ and therefore commissioned by the NHS Commissioning Board or by GP consortia

5.2 What this means for breast cancer:

· Radiotherapy contributes to the cure of 40 per cent of cancer patients [8]

· Radiotherapy has been estimated to add a three per cent gain to breast cancer overall survival [9]

· Radiotherapy makes up five per cent of the cancer budget (18 per cent is spent on drugs) [10]

· Radiotherapy services have suffered from a lack of progress on increasing access rates

· The Government’s new Cancer Strategy notes that 52 per cent of cancer patients should receive radiotherapy, but in 2007 only 37 per cent of cancer patients had access to radiotherapy [11]

· Access also varies greatly between regions: in the south and south-east access rates are estimated to be 49 per cent; in the north-east, north-west, Yorkshire and Humber the rate is only 25-35 per cent [12]

· If cancer outcomes in England are to be among the best in Europe, access to radiotherapy will have to improve

· Good commissioning will be vital to improve radiotherapy capacity and to address these regional inequalities

· Radiotherapy needs a large patient population to plan services, and planning radiotherapy services also has capital cost considerations – it should be commissioned at a national level by the NHS Commissioning Board

· Uptake of the latest radiotherapy techniques in England has also been slow. Campaign funded research has shown that a new form of radiotherapy, Intensity Modulated Radiation Therapy (IMRT), leads to reduced cosmetic side effects for women with breast cancer (reducing the costs of treating them) and lowers the risk of patients developing telangiectasia which is an indicator of developing heart disease many years after treatment [13]

· IMRT is only available in around half of radiotherapy centres in England, despite its widespread use in Europe and the USA

5.3 Key questions regarding the Bill’s proposals:

· Will the Secretary of State commit to giving the NHS Commissioning Board the power to commission radiotherapy, ensuring that this essential treatment is planned at an appropriate level?

· If GP consortia are to commission a low volume service such as radiotherapy how can sufficient regional co-ordination be secured?

· If GP consortia are to commission radiotherapy how will they be able to plan for the capital costs of new radiotherapy machines if needed?

· Will the Board review and ensure the implementation of the latest radiotherapy techniques such as IMRT across England?

6. Suggested amendments to the Health and Social Care Bill 2011

Breast Cancer Campaign has identified a number of key areas where improvements could be made to the Bill as present.

These amendments are to:

· Increase the involvement of patients, clinicians and researchers to ensure good quality care and commissioning

· Ensure that the NHS continues to promote research and uses the outcomes from research

· Ensure that inequalities continue to be tackled

7. Increasing the involvement of patients and clinicians ensuring good quality care and commissioning

7.1 Clause 11, page 7, line 29, at end insert-

"(c) hold a period of public consultation"

Impact of amendment: Clause 11 gives the Secretary of State the power to make regulations to require the NHS Commissioning Board to commission certain services as part of the health service. When deciding to make regulations under this section, the Secretary of State must obtain appropriate advice and consult with the Board. This amendment would also require the Secretary of State to hold a public consultation before deciding to make regulations under this section.

Purpose of amendment: to require the Secretary of State to consult with the public when making regulations as to what services the Board should commission. This would ensure there is a formal opportunity for NHS staff, representative bodies, patient groups and the public to contribute their views to the important decision of which services should be commissioned by the Board and which will be commissioned by GP consortia.

Effect of amendment for breast cancer: as the Bill stands, formal opportunities are limited for the public and clinicians outside primary care to contribute their knowledge and expertise to assist with deciding at what level services are commissioned. This consultation would give them such an opportunity. One example of a breast cancer service that should be commissioned at a national level is radiotherapy which requires a large planning population to be effectively commissioned.

7.2 Clause 19, page 15, line 42, at end insert-

"(c) hold a period of public consultation"

Impact of amendment: this clause requires the Secretary of State to lay before Parliament every year ‘the mandate’- a document that would set out the totality of what the Government expects from the NHS Commissioning Board. Before specifying the objectives or requirements in the mandate, it is currently proposed that the Secretary of State must consult the Board and such other persons as the Secretary of State considers appropriate. This amendment would also require the Secretary of State to hold a public consultation before specifying the objectives or requirements in the mandate.

Purpose of amendment: to require the Secretary of State to consult with the public when preparing the mandate. This would ensure there is a formal opportunity for NHS staff, representative bodies, patient groups, researchers and the public to contribute their views to the development of this important document.

Effect of amendment for breast cancer: as the Bill stands, formal opportunities are limited for the public, researchers and clinicians outside of primary care to contribute their knowledge and expertise to assist with deciding priorities for the NHS. This consultation would give them an opportunity.

7.3 Clause 22, page 33, line 11, at end insert –

"(3) When the Board prepares guidance under this section the Board must have regard to Quality Standards issued by NICE"

Impact of amendment: this clause requires the NHS Commissioning Board to publish guidance for GP consortia to assist them with their commissioning functions. This amendment would require the Board to consider the Quality Standards that will be produced by NICE before issuing guidance.

Purpose of amendment: NICE will publish Quality Standards setting out what good quality care and services should look like based on an assessment of evidence including clinical practice and research. NICE has begun the development of a Quality Standard for breast cancer, as well as standards for other conditions. Having regard to Quality Standards when preparing commissioning guidance will help to ensure that consortia have regard to clinical best practice.

Effect of amendment for breast cancer: breast cancer patients in all areas of the country should have access to best practice care and services, this amendment would help ensure this is achieved.

8. Ensuring that the NHS continues to promote research and uses the outcomes from that research

8.1 Clause 8, page 5, line 25, at end insert-

"(h) supporting research into the prevention, diagnosis or treatment of illness"

Impact of amendment: clause 8 (3) lists some of the steps to improve public health that local authorities and the Secretary of State would be able to take. This amendment would explicitly add research to that list.

Purpose of amendment: the explanatory notes relating to this clause states that subsection (3) of this clause includes ‘carrying out research into health improvement’. However subsection (3) does not specifically mention research. This is a probing amendment to clarify whether research is indeed covered under the current wording of Clause 8(3).

Effect of amendment for breast cancer: we know that lifestyle factors such as being overweight, exercise, diet and alcohol have all been identified as risk factors for breast cancer. Research into both the lifestyle factors which contribute to disease and the necessary action to encourage a reduction of exposure to these risk factors is important to make progress on improving public health and lowering the risk of developing breast cancer.

8.2 Clause 218, page 189, line 35, after "preparing" insert "or revising" a quality standard

Impact of amendment: Clause 218 sets out the functions of Quality Standards that will be produced by NICE and the requirements that NICE must fulfil when preparing the Quality Standards.

Purpose of amendment: NICE will want to review Quality Standards periodically to ensure that they represent an up to date picture of best practice care and outcomes. As current it is not clear whether NICE will be required to consult the public when revising Quality Standards and this amendment will ensure that their views are taken into account when updating Quality Standards.

Effect of amendment for breast cancer: this will ensure that the views of breast cancer patients, clinicians, researchers and organisations are taken into account when NICE revises Quality Standards to ensure that they do reflect current best practice care.

9. Ensuring that inequalities continue to be tackled

9.1 Clause 2, page 2, line 34, after "effectiveness" insert "and uptake" of the service

Impact of amendment: when the Secretary of State acts to improve the outcomes that are achieved from the provision of services, the outcomes relevant for this purpose would include considering uptake of a service.

Purpose of amendment: probing amendment to define further the meaning of Clause 2 (3)(a) the effectiveness of the service. The explanatory notes explain that this clause is covered by any service that is associated with both public health and the NHS and cites screening as an example.

Effect of amendment for breast cancer: the effectiveness of some services relies not only on their performance but also ensuring sufficient uptake. The NHS Breast Screening Programme is one example of those services. Information from the Breast Screening Programme shows that there is significant regional variation in the uptake of Breast Screening - from 56 to 84.8 per cent between different regions. [14] A Department of Health study suggests that if England is to achieve breast cancer survival rates equal to the best in Europe, then breast cancer must be diagnosed earlier. A cost-benefit analysis of improving breast awareness and uptake of breast screening showed an average cost per life saved of £2,329

9.2 Clause 3, page 3, line 5, leave out "must have regard to the need to reduce" and insert "must, so far as it is in the interests of the health service, act with a view to securing a reduction in"

Impact of amendment: clause 3 imposes a new duty on the Secretary of State to consider the need to reduce inequalities in respect of the benefits that may be obtained from the health service. This amendment would strengthen the responsibility of the Secretary of State in relation to this duty.

Purpose of amendment: it is proposed that the Secretary of State "must have regard to the need to reduce inequalities". This amendment would strengthen the responsibility of the Secretary of State in this regard.

Effect of amendment for breast cancer: we know that inequalities exist in breast cancer services and outcomes and these need to be tackled to improve breast survival rates. Despite age being the most significant risk factor for breast cancer, research has shown that older patients are less likely to receive a range of diagnostic tests and treatments compared with younger patients. Evidence suggests that this is based on their age rather than the type of tumour. [15]

There is also evidence that Black and Minority Ethnic communities and those from lower income households have lower awareness of breast cancer. Breast Cancer Campaign funded research has shown that South Asian women are less likely to visit their GP with breast symptoms than other groups. [16] This can lead to later diagnosis and data suggests that Asian and black women have lower survival rates than white women: black women aged 15-64 have significantly poorer survival from breast cancer at both one and three years than white women of the same age (85 per cent compared with 91 per cent at three years). [17]

9.3 Clause 19, page 20, line 10, after "13D" insert "13I, 13F"

Impact of amendment: the annual report that the Board is required to publish after the end of each financial year has to contain certain information, including how effectively it discharged its duties under sections 13D (duty as to improvement in quality of services) and 13 L (public involvement and consultation by the Board). This would add 13I (Duty in respect of research) and 13F (Duty as to reducing inequalities, promoting patient involvement etc) to that list.

Purpose of amendment: this would require the annual report from the Board to include an assessment of how effectively it has met its duties in respect of research and to reduce inequalities and promote patient involvement. It is not clear why the current proposals do not expect the Board to report back on how effectively it has discharged all its duties.

Effect of amendment for breast cancer: along with earlier diagnosis and screening, research has contributed to the improvement in breast cancer survival from 52 per cent in the early 1970s to 82 per cent today. [18] It is important that the NHS continues to support research to ensure that outcomes for breast cancer patients continue to improve. Reporting on work to tackle inequalities will also help to ensure that progress continues to be made in tackling inequalities in breast cancer services.

February 2011

[1] Office of National Statistics, Scottish Cancer Registry, Northern Ireland Cancer Registry

[2] CRUK breast cancer survival statistics

[3] Lavelle, K. et al. Non-standard management of breast cancer increases with age in the UK: a population based cohort of women > or = 65 years. British Journal of Cancer 2007; 96(8): 1197-203

[4] NHS Breast Screening Programme Annual Review 2010

[5] The likely impact of earlier diagnosis of cancer on costs and benefits to the NHS, Department of Health

[6] Zaman. M.J.S. and Mangtani, P. Changing disease patterns in South Asians in the UK. Journal of the Royal Society for Medicine. 2007. 100: pp. 254-255

[7] Cancer Incidence and Survival by Major Ethnic Group, England, 2002-2006, NCIN

[8] Bentzen SM, Heeren G, Cottier B, Slotman B, Glimelius B, Lievens Y, van den Bogaert W, Towards evidence based guidelines for radiotherapy infrastructure and staffing needs in Europe: the ESTRO QUARTS project, Radiotherapy and Oncology 2005; 75: 355-65

[9] Shafiq J., Delaney G. & Barton M. B., (2007) An evidence-based estimation of local control and survival benefits of radiotherapy for breast cancer, Radiotherapy and Oncology, 84, 11-17

[10] Cancer Reform Strategy 2007, Department of Health

[11] Impact Assessment to Improving Outcomes: A Strategy for Cancer, Department of Health

[12] Williams MV, Drinkwater KJ. Geographical variation in radiotherapy services across the UK in 2007 and the effect of deprivation. Clin Oncol 2009; 21: 431-40

[13] Cambridge Breast Intensity Modulated Radiotherapy Trial, Coles et al

[14] NHS Breast Screening Programme Annual Report 2010

[15] Lavelle, K. et al. Non-standard management of breast cancer increases with age in the UK: a population based cohort of women > or = 65 years. British Journal of Cancer 2007; 96(8): 1197-203

[16] Zaman. M.J.S. and Mangtani, P. Changing disease patterns in South Asians in the UK. Journal of the Royal Society for Medicine. 2007. 100: pp. 254-255

[17] Cancer Incidence and Survival by Major Ethnic Group, England, 2002-2006, NCIN

[18] CRUK breast cancer survival statistics