Health CommitteeWritten evidence from Prostate Cancer UK (LTC 12)

1. Overview

1.1 Prostate Cancer UK is the UK’s leading charity for men with prostate cancer and prostate problems. We support men and provide information, find answers through funding research and lead change to raise awareness and improve care. The charity is committed to ensuring the voice of people affected by prostate cancer is at the heart of all we do.

1.2 Prostate cancer is the most common form of cancer in men in England. Nearly 35,000 men are diagnosed with prostate cancer every year and 215,000 men are currently living with the disease. By 2030 it will be the most common cancer in the UK.

1.3 In the UK, one in eight men will get prostate cancer at some point in their lives. Older men, men with a family history of prostate cancer and men of black African and black Caribbean descent are more at risk.

2. Introduction

2.1 Prostate Cancer UK welcomes the opportunity to respond to the Health Select Committee’s inquiry on long term conditions.

2.2 Prostate cancer is a condition that men can live with for years. Men with localised prostate cancer (where it has not spread outside of the prostate) can have curative treatment but this can be associated with long term side effects. Men with advanced prostate cancer (where it has spread to other parts of the body) will also be living with the side effects of treatment. These side effects can include erectile dysfunction, loss of libido, fatigue, incontinence, depression and anxiety. They can appear either immediately after treatment, or sometime after and last for an indeterminate amount of time which can impact negatively on the quality of life.1

2.3 The side effects from treatment for prostate cancer can be debilitating and last for several years. Whilst the side effects from surgery (prostatectomy) appear immediately, side effects from radiotherapy can take months and in some cases years to appear.

2.4 One and five year survival rates for prostate cancer are high. 93.5% of men survive for one year and 81.4% of men survive for five years.

2.5 Prostate cancer primarily affects older men. This means they are more likely to have other health conditions as well as prostate cancer.

2.6 After men have received radical treatment, their PSA (prostate specific antigen) level will need to be monitored yearly for the rest of their lives, as a surveillance measure in case cancer returns. Living with the potential for cancer to return can have a deep psychological impact.

2.7 Prostate Cancer UK have produced and published a Quality Checklist, which outlines the care men with prostate cancer can expect to receive from diagnosis through to end of life care. In the absence of a NICE Quality Standard for prostate cancer, it is essential that men are aware of their rights and how best to manage their care.2

2.8 We have responded to a selection of the topics requested by the committee below, as relevant to support for men with prostate cancer.

3. The scope for varying the current mix of service responsibilities so that more people are treated outside hospital and the consequences of such service-redesign for costs and effectiveness

3.1 In respect to the most common forms of treatment for prostate cancer, surgery and radiotherapy, the recovery time is relatively short. Prostatectomies using robotic surgery, for example, can result in only a couple of days stay in hospital. However, the side effects can affect men for years after treatment.

3.2 In a survey we carried out 85% of men suffered side effects as a result of treatment. 76% of those men found the side effects difficult or very difficult to deal with.3

3.3 Presently, there are some services offered in the community, such as erectile dysfunction clinics, but these services are not available country wide. We believe that further scoping work should be undertaken to identify gaps in the provision of services, and are looking into what research we may be able to undertake. This should be targeted at side effects and how we can ensure that all men who need it have access.

4. The implications of an aging population for the prevalence and type of long term conditions, together with evidence about the extent to which existing services will have the capacity to meet future demand

4.1 Prostate cancer is a condition which primarily affects older men. As such, men with prostate cancer often have other health issues associated with old age. These can include arthritis, heart disease, hearing and sight problems and diabetes. Prostate Cancer UK believes there needs to be greater interaction between health and social care to address the fact that men are living longer and will therefore have greater needs.

4.2 This is why we have produced our Quality Checklist.4 We want to ensure that care is standardised across the whole of the UK and men receive appropriate care, regardless of where they live.

5. The extent to which patients are being offered personalised services (including evidence of their contribution to better outcomes)

5.1 Prostate Cancer UK believes there is more which can be done to ensure prostate cancer patients are offered personalised care. This should include regular check-ups by an appropriate healthcare professional, referral to specialist services if needed and a written care plan. Our own research tells that that whilst men value access to specialist nurses not all men are offered this vital resource.5

5.2 Data from the National Cancer Patient Experience survey shows that only 25% of prostate cancer patients were offered a written care plan.6 In order for care to be truly personalised, all men with prostate cancer need access to a specialist nurse and be offered a written care plan.

May 2013