Health and Social Care Bill

Memorandum submitted by Wendy Barker (HS 125)

1. ABOUT ME. I am Wendy Barker. In February 2008 I was diagnosed with ovarian cancer. I wish to share with you my experience of being diagnosed with what is the fourth most common cause of cancer death in women. There are nearly 7,000 women diagnosed like me each year in the UK, and I’m very sad to say 4,400 deaths, primarily because women are diagnosed too late.

2. I was showing all the classic signs of the illness for at least a year prior to diagnosis. I felt tired all the time, had bloated stomach, and lower abdominal and back pains. I kept attending my GP telling him that I felt unwell but wasn’t getting any better my GP conducted lots of blood tests but still couldn’t find anything wrong. Towards the end of November 2007 I felt so bad I knew I would have to go back to see the GP again yet dreaded attending as they hadn’t been very sympathetic, making it feel as though they thought I was imagining my illness. I was due a smear test in December 2007 so decided to wait for the results of that test first to rule it out. On 8th February 2008 I finally decided the pain was so bad that I needed to return to my GP I felt around my belly so that I could tell the doctor exactly were the pain was and found a lump in my lower abdomen I made an appointment that same day and by the 27th March was in hospital having a total hysterectomy. I would like the Bill Committee to consider my evidence and fears that whilst the Bill commits to saving lives from cancer, the proposed structure of the Bill is such that for people like me, being diagnosed and living with a cancer other than breast, lung or bowel, there is a very real danger that survival rates, which for ovarian cancer are already woefully low, will worsen. For me, it took all my determination and effort, over the course of a year, to get an accurate diagnosis. I was very lucky in that the cancer was detected when it was still at an early stage, but my experience in relation to my GP leaves me to question whether they are indeed the correct people to be making detailed decisions about my care. It is those who are experts in their field who should be making decisions, along with the patients – people like me, about what is in my best interest.

3. I recently attended a meeting of the All Party Parliamentary Group on Ovarian Cancer, and subsequently have been in correspondence with my own MP. From this interaction, I am deeply concerned that MPs, somewhat like the GPs are in the dark when it comes to the realities of what this Bill will mean for people like me, with a ‘less common cancer’, unless they have had the misfortune to have insight from a personal or family experience. My own MP took the time to send me a very detailed response, and for that I thank him, but almost all of the initiatives he cited hold absolutely nothing for women with ovarian cancer, and offer me, and women like me, no hope. I have included my response in Appendix 1.

4. MORE DETAIL – ABOUT MY DIAGNOSIS. I was one of the lucky women in that it was the lowest categorised ovarian cancers, which was treatable by operation alone. My symptoms had been ongoing for a year; imagine my relief that it wasn’t one of the more aggressive types. Had I known in advance of the symptoms associated with ovarian cancer I could have requested a blood test CA125 and had an internal scan to diagnose my cancer earlier. I do appreciate that ovarian cancer can be a challenging disease to diagnose, and that for a GP it must be difficult to pick out those women like me, who do have something seriously wrong. But this is precisely why I have concerns over the power, and budgets being given to GPs in the Bill, without the need to consult with experts, who know full well, what best practice should look like.

5. OVARIAN CANCER IS BEING OVERLOOKED. Ovarian cancer, I am told is one of the ‘less common cancers’, though given it is the fourth most common cause of cancer death in women, I find it very hard to understand why it does not appear to be more of a priority, especially given the fact that so many women are diagnosed once the disease has already spread, and experienced considerable delays. I look at the evidence that is now available, from charities, from international studies and comparisons, and from the Department of Health work itself, and it upsets me to think that despite this wealth of robust evidence, still no action is being taken. I urge the Bill Committee to consider the following steps which would ensure that attention is given appropriately to where progress can be made:

a. Only outcome measures for breast, lung and bowel cancer have been included, but I would like to see ovarian cancer similarly tracked and monitored, or cancer as a whole. That way much more attention will be paid at a local and national level to the things that can be done to improve awareness and access to diagnostic tests. I was bitterly disappointed to see that despite the evidence, ovarian cancer was not included in the recent investment in awareness raising. There is progress waiting to be made, and that is what concerns me, that those opportunities will not be taken up and in the meantime, more women will die.

b. That specialist expertise must be involved in the decision making around commissioning. GPs cannot be expected to know what is best for ovarian cancer, and the thousands of other diseases they see. Ideally I would like to see a national standard, that they have to follow.

6. I do welcome the new increased access to diagnostic tests for GPs, but unless women and GPs know to consider ovarian cancer as a possibility, then it will not impact significantly on improving early diagnosis. My own experience was that it took all of my determination over the period of nearly a year, to get a correct diagnosis.  I also welcome the news about the Cancer Drugs Fund, but once again, given there have been no new life extending treatments in over a generation for ovarian cancer, it will in the short term remain largely irrelevant to women like me.

7. My personal fear is that progress that has begun to be made recently for women with ovarian cancer, will go backwards, given the focus on breast, lung and bowel cancers. I know this is not the intention, but I want you to be aware of the real risk of this happening.  I would like to see ovarian cancer included in the awareness initiatives as a matter of urgency, so that women like me in your constituency have a chance to be diagnosed and treated as quickly as possible.  It seems as though we are being told we do not matter, and have to wait, because the government is choosing not to act now on the data of which it is fully aware.

March 2011

APPENDIX 1. RESPONSE TO MY MP

I would like to thank you for your letter dated 7th February 2011, and the effort that you took to explain how you feel the Government is aiming to save many more lives of those affected by cancer. Indeed I applaud the steps that you outline, and similarly hope that the lives of many more patients particularly those with breast, lung and bowel cancer can be saved. 

However 60% of cancer deaths are from cancers other than breast, lung and bowel cancer. Women such as myself who have ovarian cancer are, it appears, being left out of any such initiatives and this is despite a wealth of compelling evidence for action:

Ovarian cancer is the fourth most common cause of cancer death amongst women, after breast, lung and bowel.

Survival rates for ovarian cancer are, and remain low.  Five year survival is 36% in contrast to 80% for breast cancer, and one and five year survival rates are amongst the lowest in Europe, indicating a significant problem with early diagnosis as shown in the recent release from the International Cancer Benchmarking Partnership Study. It is known that the lives of at least 400 women are being lost unnecessarily to ovarian cancer each year in the UK, representing the difference between the UK's and the average European survival rate.

Awareness of the symptoms of ovarian cancer has been shown to be woefully low. Just 4% are very confident at recognizing a symptom (Target Ovarian Cancer Pathfinder Study using the Ovarian Cancer Awareness Measure (a validated tool).   This contrasts widely with breast cancer.

The recent National Cancer Intelligence Network Report on routes to diagnosis showed that only a quarter of ovarian cancer diagnoses were through the urgent two week referral, and some 29% were as a result of emergency presentations at accident and emergency units.