Patient Rights (Scotland) Bill Roche Products Ltd Roche is a leading manufacturer of innovative medicines, including in oncology, rheumatology and virology. We have expertise in a wide range of medical conditions spanning both primary and secondary care. As such we collect a good deal of intelligence on emerging issues and challenges for health service delivery in Scotland, as well as which initiatives are successful in addressing them. We are committed to working in constructive partnership with NHS Scotland, as well as health policymakers and stakeholders. We welcome the introduction of the Patient Rights (Scotland) Bill as a positive step forward in defining patients rights to treatment and care within NHS Scotland. The challenge will be in ensuring that all patients in Scotland are able to avail themselves of their rights, and that sufficient attention is given to the implementation of these rights and responsibilities at a local level. This will need to include adequate monitoring and outcomes measurement to ensure that every NHS organisation offers uniformly high standards of service. We broadly support the measures contained in the Bill, however we believe that reference should also be made to delivering safe and high quality services, ensuring that these important health themes are at the heart of NHS Scotland. Below we set out our response to the sections of the Bill and the healthcare principles it establishes: The patient rights and health care principles, and the criteria on which those rights are based, as set out in the Bill (Sections 1 to 5) Health care principles: We support the inclusion of a set of health care principles and the fact that these principles address the rights and responsibilities of both patients and health professionals; however, we feel that at present the health care principles are disproportionately focussed on secondary care. Consideration should be given to ensuring that patient experience and quality of health services in primary care are also reflected. Primary care is often where patients first access the system and where important early diagnosis and referral occurs. Consequently, the health care principles should include a responsibility on health care professionals to provide access to diagnostic tests, and the results of these, without delay. We would like to make specific comments about individual principles. We have grouped the health care principles thematically in our response: 1
1. Anything done in relation to the patient takes into account the patient s needs 6. The patient s abilities, characteristics and circumstances are considered These are crucial principles of health care, which recognise patients as individuals requiring personalised care. Patients needs vary according to the type of health problem or disease and one pathway may not suit another patient. There is some evidence that health care delivery does not take into account patients unique needs at present. For example, there is evidence that older people with cancer have a higher mortality rate, lower survival rate and are less likely to be offered the latest treatments 1. It is important, therefore, that information is captured to ensure that treatment is provided in accordance with the provisions of the Patient Rights (Scotland) Bill. In this example, providers should be required to report that they are providing care to patients according to an assessment of their physical fitness rather than determining care solely on the basis of chronological age. 2. Patients are treated with dignity and respect 3. Privacy and confidentiality are respected 4. Health care is provided in a caring and compassionate manner We support the inclusion of these principles in the Bill. 5. Support necessary to receive or access health care is available We have two points to make in relation to supporting patients to receive or access healthcare services in an equitable manner, which we believe is imperative. It is important to note that certain groups of patients for example, injecting drug users are less likely to access health services and therefore require more support to do so in an equitable manner. We would welcome comments from the Scottish Government as to how they intend to make these principles a reality for vulnerable and hard-to-reach groups of patients, particularly given that conditions affecting injecting drug users, such as hepatitis C, can be serious and communicable but ultimately treatable. Some groups of patients for example, those with rheumatoid arthritis can be diagnosed too late for the most effective care to be provided. 2 We believe, therefore, that the support necessary to receive or access health care should be extended to take account of when patients should access healthcare for example, when symptoms develop which might indicate a serious condition. In relation to rheumatoid arthritis for example, an awareness campaign targeted at those aged between 40 and 60 has 2
recently been recommended by the National Audit Office for the NHS in England. We believe such awareness campaigns could also be covered by the provision of the Bill. 7. Regard is had to the importance of providing the optimum benefit to the patient s health and wellbeing 8. The range of options available in the patient s case is considered 9. Health care is based on current recognised clinical guidance Roche supports the role of the SMC in recommending medicines for use in the NHS in Scotland. However, it is important to note that no legal right to SMC-approved medicines exists in Scotland, as it does for NICE-approved treatments in England. We believe that the Bill is an important opportunity to legislate to ensure that SMC guidance is made mandatory in the NHS in Scotland a position entirely consistent with principles #7, #8 and #9. In addition, we should like to highlight that for some patients - particularly those with rarer diseases such as rare cancers - clinicians can be prevented from prescribing drugs that in their clinical judgment would have a good impact on the patient s quality of life and even prolong that patient s life. In its report Exceptional Scotland 3, the Rarer Cancers Forum identified an average of almost 600 cases each year where patients had to pursue exceptional prescribing requests in order to get access to drugs that were recommended by their clinician. In some cases these requests applied to drugs that were already approved by NICE and the SMC for a different indication. The Scottish Government s response to the Public Petitions Committee s report on exceptional prescribing 4 committed it to putting in place a system whereby: If a patient could derive demonstrable benefit from a drug, it should be available on the NHS; and Where a drug is not available on the NHS, it should be because it would not deliver sufficient benefit and not for any other reason We believe these explicit principles espoused by the Scottish Government should be explicitly referred to in this section of the Bill. 10. Patients participate as fully as possible in decisions relating to the patient s health and wellbeing 11. Patients are provided with such information and support as is necessary to enable them to participate in accordance with paragraph 10 and in relation to any related processes (general or specific) 13. Communication about a patient s health and wellbeing is clear, accessible and understood 3
14. Communication about general services and processes and decisions is clear, accessible and understood Empowering patients through the provision of clear and accessible information is an important feature of a 21 st century health service. We believe that there are current gaps in the information which patients should receive about treatment options and treatments, and would welcome the Scottish Government s thoughts on how these information gaps might be plugged. They include: Providing information to patients on clinically-effective treatment options not normally funded by the NHS Providing information to patients on the operation of so-called exceptional cases processes, which have been shown to operate in an occasionally irrational manner 5 - including in relation to how decisions on individual funding requests are arrived at Providing information and support as necessary to access screening programmes, such as breast and bowel cancer screening 12. Patients are encouraged to treat any person involved in the delivery of health care with dignity and respect 15. Issues of concern are dealt with reasonably, promptly and in accordance with proper procedures We support the inclusion of these health care principles in the Bill. 16. Waste of resources in the provision of health care is avoided Roche contributes to improvements in Scotland s health and the efficiency of service delivery through the development of new and more effective treatments in the fields of oncology, rheumatology and virology. We have two observations to make in relation to the principle: Regional variations in the uptake of the most cost-effective medicines across Scotland, lead to variations in the efficiency of services. Uptake of cost-effective medicines should be as uniform as possible Medicines need to be delivered to patients at the right time to achieve the greatest cost-effectiveness. A recent National Audit Office report in England in relation to services for people with rheumatoid arthritis concluded that productivity gains could be secured by investing in services to diagnose and treat people with rheumatoid arthritis early 6. 4
Patient rights: We welcome the patient rights set out in the Bill. However, we believe that they suffer from vagueness, and would suggest that more specific rights are set out in the Bill. The NHS Constitution for England 7 sets out a number of clear patient rights - including legal rights to treatment with NICE-approved medicines - and this could be a useful template for the enshrinement of similar legal rights in Scotland. We would urge the Committee to consider developing the patient rights in the Patient Rights (Scotland) Bill so that they include more specific and measurable rights. As stated above in relation to health care principles, we believe that the main areas on which specific rights could be included are: The right to immediate access to treatments that have been approved by the SMC/ NICE The right to be supported in accessing healthcare services in an equitable manner The right to information on accessing healthcare services The right to support to participate in national screening programmes It will be important that rights established in the Patient Rights (Scotland) Bill are communicated effectively to patients and the general public. Specifically, plans should be put in place to work with different patient groups to interpret what the rights mean in practice to people with different conditions. We believe, therefore, that the Scottish Government should set out a clear statement for communicating the impact of the Bill to the public. The 12 week treatment time guarantee and the provisions to deal with breaches of the guarantee (sections 6 to 10): We support the inclusion of a treatment time guarantee (TTG) in the Bill as a step towards reducing the time from referral to treatment for all conditions. However, we urge the Committee to review the TTG to take account of diseases and conditions where time is crucial to the success of treatment, quality of life and ultimately survival. For example, we support the two-week target from referral to treatment for cancer in England and the one-week target for diagnostic results. There is a strong relationship between early diagnosis and improved survival rates. Patients in Scotland should not have to wait longer than those across the border for the same crucial interventions. For many non-cancerous conditions, good clinical practice (including NICE clinical guidelines) suggests referral times far shorter than 18 weeks. For example, in rheumatoid arthritis, the National Audit Office found that early diagnosis, referral and treatment significantly improves outcomes, often 5
halting the disease in its tracks before irreparable damage to joints occurs 8. Given this, we suggest that the Bill should make clear that patients who require treatment more rapidly than 12 weeks should not be disadvantaged as a result of the TTG. The complaints and patient feedback system set out in the Bill (Section 11): We do not have any comments to make on this section. The patient advice system and the role of Patients Rights Officers (Sections 14-17) We welcome the establishment of a Patient Advice and Support Service staffed by Patient Rights Officers (PROs). Some patients need more support than others in accessing the health care system including vulnerable patients such as injecting drug users. The Bill should include the expectation that PROs work with other professionals eg drug support workers to improve access to primary and secondary care for these people. It is important that PROs are tasked with proactively communicating patient rights to the general public as well as responding to enquiries or working with current patients in order that people know, and are empowered to exercise, their rights when they require health care. We also believe that every NHS professional should regard themselves as a champion of high quality standards in health, and therefore the health care principles set out in the Bill. We suggest that consideration should be given to including this responsibility in future staff contracts. Mr Greg Stevenson Senior Strategic Funding and Public Affairs Manager Roche Products Ltd 12 May 2010 Mr James Woodhouse Head of Public Affairs Roche Products Ltd 12 May 2010 1 Roche Products Ltd, Meeting the needs of older people with cancer: A report assessing what more can be done to tackle cancer in older people, December 2009 2 National Audit Office, Services for People with Rheumatoid Arthritis, July 2009 3 Rarer Cancers Forum, Exceptional Scotland?, March 2009 4 Scottish Government response to the Scottish Parliament s Public Petitions Committee inquiry into the availability on the NHS of cancer treatment drugs, September 2008 5 Rarer Cancers Forum, Exceptional Scotland?, March 2009 6 National Audit Office, Services for People with Rheumatoid Arthritis, July 2009 7 Department of Health, The NHS Constitution for England, January 2009 8 National Audit Office, Services for People with Rheumatoid Arthritis, July 2009 6