National Assembly for Wales
Health and Social Services Committee
Review of Cancer Services for the People of Wales
| Name of respondent:Janet Pardue/Wood |
| Are you responding on behalf of an organisation? YES |
| If so please give the name Breast Cancer Care |
| Address: Breast Cancer Care Cymru 1st Floor 14 Cathedral Road Cardiff CF11 9LJ |
| Telephone number: 029 2023 4070 |
| Would you be willing to give oral evidence to the Committee? Yes |
| If the evidence you give below is your personal view, rather then that of an organisation, please state whether or not you are willing for your evidence to be published by putting a X in the appropriate box below: |
| I am content for my evidence to be published X |
| I am not content for my evidence to be published |
| 1 | How can information technology be used more effectively to track and facilitate the patient’s journey? |
| Response | Patients with breast cancer often report problems with co-ordination of their care. The introduction of electronic patient records would mean that records could be assessed within different hospital departments and services. This would reduce the need for patients to have to keep repeating information to different hospital staff. In particular patients with metastatic breast cancer have reported problems in relation to healthcare professionals they come into contact with not always having access to their files. For example when having appointments with macmillan specialist nurses for support and advice, the macmillan nurse does not always have access to the patient’s notes. As a result they have to repeat their treatment journey to different health professionals, which would not be necessary if information about a patient was more readily available to healthcare staff dealing with the same patient at various stages of treatment and care (e.g. GP-primary care- secondary care). In particular it is important that primary care professionals are kept informed about the cancer treatment their patients received as people may approach them for information and advice. |
| 2 | How effectively is research and good practice being integrated with service delivery? What can be done and by whom to improve this? |
| Response | The creation of an All Wales Cancer Charity coalition would be an invaluable vehicle to benchmark with and ensure that patients views and external research is factored into service delivery |
| 3 | What are your views on the complexity of commissioning services? Is the process hampered by the involvement of the local health boards, cancer networks and Health Commission Wales? How could it simplified? |
| Response | There is the concern that devolving commissioning to PCT level will put commissioning of specialised services at risk and also that there are few commissioners at PCT level who have experience of commissioning from the voluntary sector. In addition there are dangers in seeing voluntary organisations purely as service delivery bodies, rather than as independent organisations who have a role in commenting on the quality of services and the impact of policy more generally. |
| 4 | What evidence is there of the value of screening and immunisation? |
| Response | There is evidence of the NHS Breast Screening Programme that breast screening does save lives. In September 2000, research was published which demonstrated that the screening programme had lowered mortality rates from breast cancer in the 55-69 age group in England and Wales. There is also international evidence of the value of breast cancer screening. In 2002, the World Health Organisation's International Agency for Research on Cancer (IARC) concluded that mammography screening for breast cancer reduces mortality. The IARC working group, comprising 24 experts from 11 countries, evaluated all the available evidence on breast screening and determined that there is a 35 per cent reduction in mortality from breast cancer among screened women aged 50 - 69 years old. This means that out of every 500 women screened, one life will be saved. Breast Cancer Care supports the NHS Breast Screening Programme. However, Breast Cancer Care has concerns that women in the UK are not as aware as they should be about the NHS Breast Screening Programme and their access to screening opportunities. We are also worried that some women may conclude that because they are no longer routinely invited to attend breast screening after the age of 70 years they are not longer at risk of breast cancer. These issues were highlighted in a survey conducted by Breast Cancer Care and Boots in July 2003. A total of 922 women aged 18-99 years participated in the survey and 414 of these were aged over 50. Only 28 per cent of women between the ages of 50-70 were aware that this is the age range during which they will be invited to attend breast screening. The survey also found that while 80 per cent of screening age participants always take up their screening invitation, 20 per cent do not. It also showed that 13 per cent of women over the age of 50 think that screening stops at 70 because they are no longer at risk after this age.It is crucial that information about screening be readily available to women leaving the screening programme. Those women need to be informed that they are still at risk and should remain breast aware. There is also a need for better education campaigns around breast awareness and the availability of the NHS Breast Screening Programme. |
| 5 | What are the barriers to the NHS in Wales keeping abreast of, and responding to, developing technologies and therapies? How might these barriers be overcome? |
| Response | Delays over the appraisal of new treatments by the National Institute for Health and Clinical Excellence (NICE) are commonly reported. The Scottish Medicines Consortium (SMC) appears more efficient in ensuring that new drugs are quickly reviewed for use in the NHS in Scotland following them receiving a license. For example, the SMC approved the use of Taxotere in October 2005 whilst NICE has only just published the draft guidance recommending the use of Taxotere for early oestrogen-receptor-positive invasive breast cancer in post-menopausal women.However, the introduction of the new NICE Single Technology Appraisal (STA) process aims to speed up the approval of new treatments for use in the NHS in England and Wales, and ensure they are reviewed closer to receiving a licence. This should enable patients in Wales to benefit from access to new drugs more quickly. It will also require NHS providers to plan in advance and monitor new treatments on the horizon to ensure funding for new treatments is available. It will be important to monitor the effectiveness of the new STA in speeding up access to new treatments. |
| 6 | How can the NHS and the voluntary sector work together more effectively to deliver services? |
| Response | Breast Cancer Care has a long history of working closely with the NHS. Our publications are used widely within breast units and many breast care nurses refer patients to our support services in Wales.To improve the working relationship between the NHS and Voluntary sector in order to more effectively deliver services, we would suggest that a Taskforce is set up in Wales with representatives from the NHS and Voluntary Sector to look at the development of partnerships. Breast Cancer Care would suggest that the NHS examines how to more effectively use and disseminate resources that have been developed by the voluntary sector such as patient information. It would also be useful to examine strategies for referral of patients to support services provided by the voluntary sector.Patient organisations from the voluntary sector can also help the NHS to consult with users, which could help support the development of NHS services in the future. Particularly with the creation of 'patient-led’ services. |
| 7 | How can the collection and use of data on where the terminally ill spend their last weeks or months be improved better to inform service provision for those people? |
| Response | A recent study carried out by King’s College London that examined terminally ill cancer patients’ wishes to die at home recommends a five pronged approach to make it easier for people to choose to die at home if they wish:· families should have more say and support in what happens · there should be public education about the issue · continued effort to improve home care facilities · early risk assessment · palliative care training for nurses and home help as well as experts Ref: B. Gomes and I. J. Higginson, Factors influencing death at home in terminally ill patients with cancer: systematic review (BMJ 2006; 332;515-521)In relation to breast cancer, we would like to highlight the following issue: Secondary breast cancer can be treated but not cured. Currently UK registries do not collect data on the number of people living with secondary breast cancer. This lack of data greatly impedes the planning of services for people living with secondary breast cancer. Treatments for secondary breast cancer have improved considerably over the last few years and some people can live active lives for years. Like anyone living with a long term illness, people with secondary breast cancer may have a range of needs, including emotional and psychological support. They may also require assistance with financial and work issues. In order to ensure people living with secondary breast cancer receive the care, treatment and support they need it is vital to know how many people in Wales and the UK are living with this diagnosis. Without such data it is extremely difficult to ensure the right services are being provided for this group of patients. |
| 8 | There are a number of issues around prescribing and the cost of drugs: |
| 8(i) | What should be done and by whom to reduce continued prescribing of inappropriate drugs? |
| Response | Clear guidance on new treatments from NICE along with clinical guidance on treatment should help to ensure appropriate prescribing. However, to ensure this happens implementation of guidance needs to be supported and adequate scrutiny of implementation carried out. |
| 8(ii) | Should people who are prepared to pay privately for drugs not available to them on the NHS, be able to do so without having to become private patients and having to pay for all their treatment? |
| Response | Breast Cancer Care believes all effective breast cancer treatments should be available on the NHS. However, if there is a situation in which a breast cancer drugs is not available on the NHS, patients should not have to become private patients and have to pay for all their treatment in order to access this one treatment. At Breast Cancer Care we have heard from patients willing to go to great lengths, including selling their homes, to access a new treatment that is not yet available on the NHS. We do not believe that they should then have to be put into further financial hardship by having to pay for all their treatment and care in order to access one treatment. This could cause immense anxiety to patients at an already stressful time. It is also important that patients can continue to access the support services available through the NHS. |
| 8(iii) | Do doctors, pharmacists and other health professionals have adequate access to independent advice and guidance on the prescribing of drugs? |
| Response | NICE should provide independent advice and guidance on the prescribing of drugs. |
| 9 | Are services centred on the patient, with service users consulted? If not what are the reasons for this and how patient involvement be improved? |
| Response | Breast Cancer Care believes that user involvement in Wales could be improved. The geographic spread of the Welsh population is a key issue to take into consideration when working towards consulting with and involving patients. Sometimes health professionals assume that they know what people need regarding services but this is not always the case. Focus groups, patient involvement groups, forums on the internet are all ways to capture user involvement. At Breast Cancer Care user involvement is about making sure that the views of people with personal experience of breast cancer and their families/friends are listened to as we develop our services. It is also about us making sure their views are represented when we are communicating to external groups such as government departments.Breast Cancer Care has a long and successful track record of involving people affected by breast cancer, their families and carers (users) in all our work. We are beginning to develop a user involvement strategy and to look at how we ensure that the views of people with direct experience are integrated into the organisation’s planning and activities. For example, in the last 6 months Breast Cancer Care has reviewed its services and has been consulting clients about their validity. It is important that the NHS in Wales undertakes a comprehensive consultation on user involvement. Voluntary organisations such as Breast Cancer Care could support the further development of user involvement in Wales and help the NHS access patients for their views.Breast Cancer Care is currently conducting a survey which aims to gather patients’ views and experiences of breast cancer treatment, support services and information in Wales. As agreed Breast Cancer Care will provide the Health and Social Services committee with the findings of the survey in due course. |
