Health and Social Care Bill

Memorandum submitted by Target Ovarian Cancer (HS 70)

1. About Target Ovarian Cancer

Target Ovarian Cancer is a registered charity (no 1125038) dedicated to achieving a long and good life for every woman with ovarian cancer in the UK. After breast, lung and bowel cancer, ovarian cancer is the fourth biggest cancer killer in women. There are approximately 6,800 cases each year, with 4,400 deaths -more than four times the number of women who lose their life to cervical cancer each year.

2. Target Ovarian Cancer works in the areas of research, education and advocacy. Through the Target Ovarian Cancer Pathfinder Study (2009 and ongoing) the charity maps the challenges and opportunities to improve quality of life and survival for women with ovarian cancer, and works to develop initiatives to deliver progress, through collaboration with women, health professionals and other organisations. Target Ovarian Cancer has invested funding in a feasibility study for international benchmarking, which fed in to the International Cancer Benchmarking Partnership Study, in support services (courses and resources) for women, training women to raise awareness in their local communities, and in the development of a CPD module for GPs, which won an Excellence in Oncology Award. In 2010 it launched the Six Simple Steps campaign, encouraging MPs to consider taking action on at least one of the steps identified, to help save the lives of at least 400 women a year. This is the number of women who are currently dying unnecessarily from ovarian cancer, because our survival rates lag behind the average European rates. Target Ovarian Cancer acts as the secretariat to the newly formed All Party Parliamentary Group on Ovarian Cancer. Target Ovarian Cancer has recently been accredited by the Information Standard.

3. Summary of evidence

Target Ovarian Cancer recognises the opportunities to improve outcomes for cancer patients, but would urge the Bill Committee to include amendments and additions to ensure that the opportunities which presented themselves through the White Paper are included and reinforced in the Health and Social Care Bill, in order to ensure that deliverable outcomes are achievable in this most fundamental reorganisation of services. Specifically our concerns relate to the lack of global rather than just three site specific cancer outcome measures for breast, lung and bowel cancer; the potential conflict of interest between GP as both provider and commissioner together with the lack of specialist expertise in commissioning; the need for mandated care pathways in less common, life threatening conditions; and the appropriate role to enable meaningful engagement for patient involvement and the voluntary sector.

4. Much of what we say is also applicable to other less common cancers and other life threatening conditions. We believe there are some inherent conflicts within the Bill, and that the Committee have the opportunity to reduce these conflicts to good effect.

5. In more detail – Outcome measures

The White Paper highlighted one and five-year cancer survival (in general) as an improvement area, and proposed these survival figures as outcome indicators in order to prevent premature death which is amenable to healthcare. One-year survival rates are seen as a proxy measure for late diagnosis. Low one-year survival rates, it should be noted, also impact on five-year survival rates. It is important for both to be considered when trying to deliver and measure improvements. We welcomed this as a way for commissioners to think across the board about early cancer diagnosis. However, the Bill has focused only on outcome measures for three specific cancers – breast, lung and bowel. We would prefer to see measures for cancer as a whole, i.e. a commitment to global cancer measures (for one and five year survival), something which we know is also being called for by the Rarer Cancers Foundation in their recent report Primary Cause? [1] . Failing that, we would want to ensure ovarian cancer is included as a site specific measure. After all, it will be one of the first NICE Quality Standards to be developed (along with bowel and lung cancer) and one and five-year survival rates have already been verified through the International Cancer Benchmarking Partnership Study [2] . Ovarian cancer is after all, the fourth most common cause of cancer death in women, with 4,500 deaths each year.

6. This focus on three cancers means that some 60% of people who die from cancer will not be protected by the outcome indicator, representing the proportion of cancer patients who die from cancers other than breast, lung and bowel. We believe this will inadvertently result in Commissioners focusing only on the ‘big three’ cancers. We have already seen that this results in the exclusion of other cancers. For example the new investment (£10.5m) in awareness initiatives is concentrating on breast, lung and bowel cancer, excluding ovarian cancer, despite compelling evidence that late diagnosis is a key issue that must be tackled. The Bill places a duty ‘as to the improvement of quality of services, with a view to continuous improvement in quality of services including prevention, diagnosis or treatment of illness’ (section 2). We believe however that the adoption of just three site specific cancer measures will not only lead to a widening of inequality between cancer types in terms of diagnosis and survival, but there is also a very real risk that survival rates for the majority of cancers not covered will fall, affecting the overall cancer survival rates negatively.

7. We are therefore asking for a generic cancer measure for one and five-year survival rates to be reinstated in the Bill. Failing that we believe that ovarian cancer, as a minimum should be included as an outcome measure. This is because of the following compelling evidence:

· The International Cancer Benchmarking Partnership Study as previously cited showed that one-year survival rates for ovarian cancer are the lowest in comparison to the other countries in the study. This is a proxy for late diagnosis

· The Eurocare 4 study showed that more than 400 lives of women could be saved in the UK each year, if we matched the average European survival rate for ovarian cancer [3]

· The Target Ovarian Cancer Pathfinder Study (2009) [4] showed that over a third of women wait six months or more from first visiting their GP to getting a correct diagnosis of ovarian cancer

· The Pathfinder Study also showed (using the National Awareness and Early Diagnosis Initiative validated ovarian cancer awareness measure) that just 4% of women are very confident about recognising a symptom of ovarian cancer. Hence awareness amongst women is key to ensuring women visit their GP promptly

· The National Cancer Intelligence Network routes to diagnosis study showed that only 26% of women with ovarian cancer were referred through the urgent two-week referral, and some 29% were diagnosed as a result of an emergency presentation [5]

· Data to be released from the GP Audit will show that after pancreatic cancer, ovarian cancer has the second highest rates of diagnosis at a late stage.

· The NICE clinical guidance on the recognition of ovarian cancer clearly lays out the key symptoms and importance of frequency and persistency triggering investigation [6]

8. Stark differences already exist between services (including diagnostics) for more and less common cancers, as this example from a woman shows:

9. "It took several months for my ovarian cancer to be diagnosed. It was like being on a dirt track with several no entry signs along the way, and a two miles per hour speed limit. At the point when my gynaecologist decided I probably had ovarian cancer, I was told I would have to wait six weeks for surgery. However, when six months later, my oncologist suspected I may have breast cancer it was a completely different story. In less than a week I was at a one-stop clinic, where they were going to do a mammogram, ultrasound, and biopsy, and tell me the results the next day. I felt I was getting red carpet treatment."

10. In summary: Given the very strong evidence on late diagnosis, and lack of awareness, we call upon the Committee to reinstate the generic one and five year cancer survival measures, or failing that, to include more site specific measures, including ovarian cancer. This is to ensure the less common cancers do not become even less of a priority in the eyes of the commissioners, causing survival rates to fall.

11. As a patient organisation who has worked to present robust evidence on diagnosis, access to tests and survival, we understand the urgency of taking action to improve our poor rates of late diagnosis, and have presented the opportunities that exist at a parliamentary, policy and ministerial level, even to the extent of offering joint funding for programmes. As such, we will continue to track one and five year survival in ovarian cancer nationally, and assess the impact of the reforms accordingly, holding the Government to account if as we fear, we fail to see improvements, or even more concern, see a worsening in relation to late diagnosis.

12. In more detail – GP Commissioning

For less common conditions, such as ovarian cancer, there is an inherent conflict in the GP as commissioner, and GP as provider, resulting in services that are not in the best interest of women with ovarian cancer, or people with other less common conditions. In particular we have concerns over:

13. There is a strong possibility that the identified, necessary uptake of increased access to diagnostic tests, to ensure more women are investigated for ovarian cancer and diagnosed quickly will not take place because cost and not clinical decision-making will be the key driver. Currently one in seven GPs cites difficulty of access to such tests as the reason for delays in women’s diagnosis of ovarian cancer [7] . This is why we have welcomed the decision to ensure all GPs have access to diagnostic scans for ovarian cancer. However, with GPs as both budget holders and service providers, we have concerns they will be reluctant to increase investigations, with cost, not clinical decision making driving their desire for investigations. This goes against the need to lower the threshold for diagnostic testing, in order to promote earlier cancer diagnosis, as highlighted in Improving Outcomes – A Strategy for Cancer. Already there is evidence published in Pulse on 24th February 2011 that new primary care gateways are rejecting GP referrals in order to drive down cost. [8] For women, it is in their best interests to be investigated as soon as possible to rule out a condition like ovarian cancer, in order to reduce the significant delays that contribute to the late diagnosis of women in the UK.

14. For those women who are investigated, we also have concerns that cost rather than quality will affect decision-making. Recently a Primary Cancer Cancer Lead (GP) told us of how his PCT buys in diagnostic services for transvaginal ultrasound, one of the key investigations for women with ovarian cancer. The decision was based on cost, and on timeliness of access. However he finds that the reports that are returned can be non-committal, in contrast to those from his local NHS provider. It has resulted in a number of women having to be referred on for second investigations. This has a number of potential outcomes including a) additional delay for those with ovarian cancer, b) additional anxiety for those healthy women undergoing repeat testing, or c) where the GP decides not to refer for a second test, the potential for false reassurance, ultimately risking the woman presenting as an emergency case at A&E, which is associated with worse outcomes. The GP’s PCT have not yet chosen to alter their service provider, in common with others - in a point that is noted in the first Health Select Report on Commissioning in paragraph 68 [9] .

15. A GP only sees a case of ovarian cancer once every five years. Recent progress in five-year survival rates has been achieved through the organisation of specialised services [10] . We are concerned that GPs are not best placed to commission services right along the patient pathway, in the best interests of women who have ovarian cancer. We would like the Committee to consider the role of specialist involvement in the commissioning process, so that the appropriate expertise is utilised. We believe the effort should be placed into strengthening the coordination and communication between specialist expertise, rather than driving back the decision making process to a general practitioner.

16. More detail – mandated integrated care pathways

We would also urge the Committee to consider the inclusion of mandated care pathways in the Bill for those with less common, but life threatening conditions such as ovarian cancer. Localised decision making risks the swift exacerbation of post code lotteries. Women clearly want to know that they are being given appropriate care, no matter where they live in the UK. This should include access to and similar services offered by Clinical Nurse Specialists, who have been identified as the most important source of support for women with ovarian cancer [11] . Similarly they want equity of access to current and newly developed drugs which may extend their life, and to clinical trials. At a time when they are extremely unwell, and have just been given a diagnosis of ovarian cancer, which carries such a poor prognosis, they are not in a position to be able to investigate standard models of care, effectively being asked to carry out quality control. Without mandated integrated care pathways we are extremely concerned that power is being handed to commissioners ‘ in good faith’ but without redress, and that this has the potential, at best, to lead to considerable variation in services, and at worst, a significant decline in outcomes. We welcome the forthcoming NICE Quality Standard on Ovarian Cancer, but unless this type of guidance is integrated and mandated, it will have no significant effect.

17. More detail -hyperlocalism and the effect on patient involvement

We welcomed the mantra of ‘No decision about me, without me’, in the White Paper, but have been far less convinced, in the content of the Bill, that the wishes and priorities of women with ovarian cancer will be met under the current plans for patient and public engagement.

18. As a less common disease, and one which carries a very poor prognosis, the incidence of the disease, and typical patient pathway need to be considered in creating appropriate structures for patient involvement. We know from our work with women at Target Ovarian Cancer that they are very keen to share their thoughts as to their priorities, and standards of care. They have been able to help us, through the Target Ovarian Cancer Pathfinder Study, build a clear picture of what care looks like along the patient pathway. Similarly they can be very informative at a regional level (on services offered by a regional specialist centre). However, if an average GP consortia will have approximately 13 women with ovarian cancer a year, and given the vast range of conditions consortia will be dealing with, patient involvement at this level can be nothing other than tokenistic. We would like the Committee to ensure that different levels of patient and public involvement are defined appropriately, and that patients can play an important and meaningful (not tokenistic) part in reviewing specialist services, advising the National Commissioning Board, in developing the NICE Quality Standards, and working through voluntary sector organisations such as Target Ovarian Cancer and groups such as Cancer Networks.

19. More detail – the meaningful role of public, patient and voluntary sector engagement

There is currently much discussion about the role of the voluntary sector, and the ‘Big Society’. Yet this Bill misses an important opportunity to build on the invaluable knowledge of patient pathways, patient experience and links to specialist expertise around the UK that exists through organisations such as Target Ovarian Cancer. Organisations such as ours not only actively feed into consultations, but have a much greater capacity to work with Commissioners, NICE, Commissioning Boards, and Health and Wellbeing Groups in terms of supporting their decision making process, and developing new opportunities. We already have a track record of mobilising communities of ovarian cancer patients, in raising awareness. However, there is an issue of capacity. Many organisations are small, and as such do not have the capacity to build separate relationships with all commissioners. We would suggest, much as the Department of Health is currently accrediting organisations to give health information to patients (The Information Standard, which Target Ovarian Cancer holds), could it not also accredit organisations to give information to commissioners.

20. Our initial optimism over the potential role of organisations such as ours and volunteers in the Big Society has diminished. We have found it practically impossible to engage at a meaningful level in terms of delivering programmes to improve outcomes, even when we have brought significant money to the table – such as for International Benchmarking, and awareness campaigns.  Based on our experience to date, we are not optimistic that women with ovarian cancer, at a local level, will be able to attempt likewise either.

March 2011