Cardiovascular Patients Bill of Rights Spring 2009

Transcription

1 Cardiovascular Patients Bill of Rights Spring 2009 THE BRITISH CARDIAC PATIENTS ASSOCIATION

2 Preamble The National Health Service (NHS) belongs to the people. It is there to improve our health, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can It touches our lives at times of basic human need, when care and compassion are what matter most. 1 Consultation on the NHS Constitution, 2008 The outlook for patients with cardiovascular disease (CVD) has never been better. Dramatic progress has been made over the past few years, with investment and improvements in prevention, treatment and care translating into a dramatic drop in death rates. The ambitious target on mortality rates, set alongside the National Service Framework in 2000, has been met five years ahead of schedule: the number of deaths from CVD has been reduced by 40% in the under 75s, meaning that 22,000 fewer people are dying from CVD each year. So there are many reasons to be optimistic. But the battle against CVD is far from won. The Government looks set to miss its target for reducing inequalities in circulatory disease (those affecting the circulation of the blood in the heart, arteries, capillaries or veins, including heart attacks and strokes). CVD is still a major cause of ill-health and the UK s single biggest cause of death. 2 Each year in the UK: n 146,000 people suffer a heart attack 3 n 110,000 people have a stroke 4 n At least 300,000 people live with moderate to severe disabilities resulting from their stroke 5 n More than 720,000 people suffer painful symptoms of peripheral arterial disease 6 (PAD) n More than 1.98 million people live with angina 7 This comes at a cost to patients, to their families, to the NHS, and to society as a whole. In 2006, the consequences of CVD cost our health system some 14.4 billion. But this underestimates the full economic burden. Including productivity losses and the cost of informal care for people with CVD, the total cost of CVD in the UK is 30.7 billion every year. 8 So there is everything to gain from further efforts to tackle CVD building on recent progress, reducing inequalities, harnessing innovation, and improving patient care. But where should these efforts be focussed? Bristol-Myers Squibb and sanofi-aventis have jointly supported the development of the BCPA Bill of Rights through a grant for publication and through providing editorial input to the final document. The view and opinions expressed in the Cardiovascular Patients Bill of Rights are those of the British Cardiac Patients Association only. 2 THE BRITISH CARDIAC PATIENTS ASSOCIATION

3 The British Cardiac Patients Association (BCPA) believes that the proposed NHS Constitution provides an opportunity to set out in detail the services that cardiovascular patients have the right to expect from the NHS, as well as their obligations to help themselves and so contribute to the management of their own condition. Therefore to sit alongside the NHS Constitution, we have developed the Cardiovascular Patients Bill of Rights. It is based on five fundamental rights, which we believe form the basis for transforming patient care for cardiovascular patients: Fundamental Rights 1. The right to effective primary care management green light not blue light 2. The right to early intervention acting fast, to make the most difference 3. The right to the best treatment effective therapy for all 4. The right to joined-up support and care care designed around the patient, not the organisation Many of these rights are based on what patients and their families tell us would have helped to improve the quality or their experience of care when they had their stroke or heart attack. Some of them have been highlighted in previous Government policy documents but are yet to be achieved across England. Implementing them should be fundamental to the core business of the NHS. We are urging every Primary Care Trust (PCT) to examine our Bill of Rights, to identify where they are already meeting the standards set out in this Bill of Rights, and to identify where they could go still further. Successes and there are many should be celebrated and shared. Equally, where a PCT fails to provide these fundamental rights they should be held accountable and explain why. The BCPA is keen to work with Government, the NHS and all interested parties to see the Bill of Rights for Cardiovascular Patients translated into reality making a real difference to patients experience of care. 5. The right to holistic risk assessment treat the patient, not just their symptoms 1. A Consultation on the NHS Constitution. Department of Health, June Allender S, Peto V, Scarborough P, Kaur A and Rayner M (2008) Coronary heart disease statistics. BHF: London (Page 12). 3. Allender S, Peto V, Scarborough P, Kaur A and Rayner M (2008) Coronary heart disease statistics. BHF: London (Page 43). 4.Reducing Brain Damage: Faster access to better stroke care. National Audit Office, Reducing Brain Damage: Faster access to better stroke care. National Audit Office, Norgren L, et al. Inter-society consensus for the management of peripheral arterial disease (TASC II). Eur J Vasc Surg. 2007;33:Supplement Allender S, Peto V, Scarborough P, Kaur A and Rayner M (2008) Coronary heart disease statistics. BHF: London Heartstats (Page 45). 8. Allender S, Peto V, Scarborough P, Kaur A and Rayner M (2008) Coronary heart disease statistics. BHF: London Heartstats (Page 214, table 13.1) 3

4 Summary of Cardiovascular Patients Bill of Rights 1. The right to effective primary care management green light not blue light n Regular risk assessment for all people over the age of 40 n Active management of anyone found to have risk factors for cardiovascular disease n Rigorous disease management for patients found to have any form of cardiovascular disease n Face-to-face discussions between GPs or practice nurses and patients regarding medications and, in particular, any changes to medications n Ongoing information, education and support for patients and carers, including advice on what to do if symptoms worsen n For patients who present at their GP surgery, walk-in centre or local hospital with urgent symptoms, swift and accurate triage followed by transfer to an appropriate secondary care centre for treatment and further assessment 2. The right to early intervention acting fast, to make the most difference n Help from a suitably qualified individual within eight minutes of calling for help n For any cardiac call, the individual dispatched to help should be a trained paramedic, qualified and equipped to administer treatment n Early initiation of treatment, as soon as possible after an attack and ideally in the ambulance, to limit damage to heart muscle and maximise chance of recovery n Administration of thrombolysis for eligible patients within 60 minutes of a call for help (call to needle) and 20 minutes of arrival at hospital (door to needle) n Primary angioplasty for eligible patients within two hours of a call for help n Admittance to an appropriate secondary care centre for treatment and further assessment, no matter what time of the day or night n Understandable, clear information for relatives if a patient is taken away in an ambulance 3. The right to the best treatment effective therapy for all n Right to best treatment available to proven therapies, recommended by the clinician and tailored to individual patient need n For patients with minor stroke and transient ischaemic attack (TIA), access to imaging enabling initiation of treatment on the day of their stroke n Full information about the therapies available, and what to expect in terms of impact, side-effects and length of therapy n Support for patients in taking their medicines n Full consultation on and recognition of patient choice in any proposed change in medication n Treatment in line with Joint Royal Colleges Ambulance Liaison Committee guidelines 4 THE BRITISH CARDIAC PATIENTS ASSOCIATION

5 4. The right to joined-up support and care care designed around the patient, not the organisation n Patients should have a seamless experience throughout their healthcare journey n Focus on needs of patients and carers, not organisational boundaries n Access to a specialist cardiac/stroke/vascular nurse as a single point of reference for inquiries and concerns n A needs assessment, encompassing arrangements for any social care support, to be made before discharge at a prehab appointment n Advice on what next what to expect and what you can and can t do when you get home n Efficient and timely transfer (ideally electronically) of full information on the range of treatments required by the patient from secondary to primary care to enable good continuity of therapy n Copies of treatment plans or records to be given to patients in language that they can understand n Patient and carers information needs met throughout the patient journey 5. The right to holistic risk assessment treat the patient, not just their symptoms n Communication of what risk means for the individual patient and advice on actions they can take to reduce their risk of a further event (particularly for patients with multivascular disease i.e. disease in more than one part of the body, who are at especially high risk) n Empowerment and support for patients and carers in taking steps to reduce their risk of a further event n Holistic risk assessment after their first cardiovascular event, including testing for peripheral arterial disease (PAD), diabetes, high blood pressure, kidney function, and TIA n Access to rehabilitation services, including physiotherapy, exercise and walking programmes n Regular follow-up and active management of patients with any form of cardiovascular disease n Cardiovascular risk assessment for partners of patients with cardiovascular disease, since they may share environmental risk factors n Sensitive management of palliation and end of life care 5

6 1. Effective primary care management green light not blue light Proper investment in preventative measures will reduce the incidence and impact of cardiovascular disease on both patients and the Health Service. Prevention works best where people have most contact with the NHS through primary care and it is essential that services focus on those measures which will be most effective in lessening the burden of disease. We believe patients should know and understand their cardiovascular risk, and the steps that they and their GP can take together to minimise their risk of having a heart attack or stroke. n Regular risk assessment for all people over the age of 40 We welcome the Prime Minister s announcement of a national risk assessment programme for those over the age of 40. The scheme must, however, include measures to engage hard to reach groups for example, older men, or people from different ethnic backgrounds who may not have regular contact with primary care services and may also be at a greater risk of cardiovascular disease. It should also include measures to identify people with PAD (vascular disease in their legs), given that PAD is not only painful in itself but also increases the risk of having a stroke or heart attack. The scheme must be rolled out in a timely fashion, with a focus on ensuring equity between Primary Care Trusts. Proper screening programmes will help to reduce health inequalities and increase awareness of risk factors amongst the public. n Active management of anyone found to have risk factors for cardiovascular disease Whilst screening is an essential tool for identifying those at risk of cardiovascular disease, it is only worthwhile with active follow-up and management. Primary care practitioners must make sure proper frameworks are in place for monitoring follow-up with patients and take steps to reach out to any who are not involved with appropriate risk factor management programmes. Active management must be offered to all those found to be at risk as this will have the most dramatic and positive impact on reducing incidence. Currently, too many patients slip through the net due to the ineffective monitoring of patient needs. n Rigorous disease management for patients found to have any form of cardiovascular disease Primary care services must offer patients simple and accessible routes to treatment to ensure high levels of concordance. Rigorous disease management requires primary care services to continuously monitor progress against risk factors and to adjust and adapt this management in a timely fashion. 6 THE BRITISH CARDIAC PATIENTS ASSOCIATION

7 n Face-to-face discussions between GPs or practice nurses and patients regarding medication and, in particular, any changes to medications Patients have a right to information and to active involvement in discussing the care they receive. GPs and practice nurses should make sure they consult and advise patients in an open fashion on the medicines they receive. Not only will this increase patient dignity and experience, but it will ensure higher levels of patient concordance, thus reducing the burden of disease. It is particularly important to involve patients in discussions on any changes to medications to ensure the reasons for any change are communicated effectively and that patients have a real input into the process. Too often patient experience is hampered by a lack of consultation which can lead to disempowerment and lack of concordance. access as required. Services could invest in new ways of communicating with patients and carers, such as through online resources. n For patients who present at their GP surgery, walk-in centre or local hospital with urgent symptoms, swift and accurate triage followed by transfer to an appropriate secondary care centre for treatment and further assessment Whilst primary care is the main access point for those at risk, effective links with secondary care are essential to ensure a successful patient journey. All too often patients suffer as a result of a lack of clear patient pathway. For patients presenting with urgent symptoms, it is essential that primary care facilities are in place for effective triage. n Ongoing information, education and support for patients and carers, including advice on what to do if symptoms worsen Information and education are the keys to helping patients understand how to reduce their risk, and they are essential for helping them know what to do should symptoms worsen. Primary care services should put in place measures to provide such information, and enable appropriate support and 7

8 2. The right to early intervention acting fast, to make the most difference Heart attacks or strokes are medical emergencies. Patients chances of surviving depend on their symptoms being recognised and on them having the right assistance swiftly. n For a suspected heart attack, help from a suitably qualified individual within eight minutes of calling for help The National Service Framework for Coronary Heart Disease set a target that people with symptoms of a heart attack should be reached by an individual trained and equipped to help within eight minutes of a call for help. The BCPA supports this as a fundamental patient right. In 2006/7, only 19 of the 32 ambulance services in England met the target for a response within eight minutes in 75% of life-threatening cases an improvement from only three of the services achieving this in 2000/01. However, there is clearly still more to do to bring the remaining services up to this standard. n For any cardiac call, the individual dispatched to help should be a trained paramedic, qualified and equipped to administer treatment Answering the call for help within eight minutes is still not enough. It is critical that the person who is dispatched is a paramedic and qualified to administer treatment. n Treatment should be initiated as soon as possible after an attack and, ideally, in the ambulance, to limit damage to heart muscle and maximise chance of recovery An early treatment intervention really can make the difference between life and death, and so the ability to treat is especially important when ambulance transport times are relatively long. We believe that when a call comes in where a cardiac event is a potential cause, a paramedic should automatically be dispatched. This also depends on non-classic symptoms of a heart attack being recognised, as well as chest or arm pain. n Administration of thrombolysis for eligible patients within 60 minutes of a call for help (call to needle) and 30 minutes of arrival at hospital (door to needle) The NSF also set a target to increase to 75% the proportion of heart attack patients receiving thrombolysis (a clot-busting drug) within 30 minutes of arriving at hospital. Data for 2006/7 from the Myocardial Infarction National Audit Project, based at the Royal College of Physicians, shows that 84% of patients in England received thrombolysis within this timeframe, but only 70% of patients in Wales. 9 This inequality must be addressed. n Angioplasty for eligible patients within two hours of a call for help Angioplasty is a procedure for helping diagnosis of possible blockages in coronary arteries or in veins or arteries of a past bypass. For the 8 THE BRITISH CARDIAC PATIENTS ASSOCIATION

9 treatment to work, it needs to be done quickly to minimise the amount of damage to the heart muscle from the lack of oxygen that occurs when blood-flow is blocked. NHS research demonstrates the need for patients to undergo the procedure within two hours of having the event, and preferably sooner. n Treatment for all patients should be in line with Joint Royal Colleges Ambulance Liaison Committee (JRCALC) guidelines Guidelines for clinical practice by ambulance personnel, including the administration of treatments by paramedics, are produced by the Joint Royal Colleges Ambulance Liaison Committee (JRCALC). JRCALC guidelines should be effectively communicated to the emergency care community to enable sharing of best practice. BCPA support and endorse JRCALC s guidelines for the treatment of acute coronary syndromes and strokes/transient ischaemic attacks, and believe they should be fully implemented across the UK. n Admittance to an appropriate secondary care centre for treatment and further assessment, no matter what time of the day or night Once in the ambulance, patients then need to be taken swiftly to the most appropriate secondary care centre. This is particularly important for stroke patients. Stroke is as much of a medical emergency as a heart attack. Patients need rapid assessment by magnetic resonance imaging (a type of scan) to enable the type of stroke to be determined and therapy chosen accordingly. The Stroke Strategy states that patients with a suspected stroke should be immediately transferred to a hospital providing hyperacute services throughout the day and night this includes expert clinical assessment, rapid imaging and the ability to deliver intravenous thrombolysis. 10 All patients whether cardiac or stroke should be transferred smoothly and speedily from ambulance to triage to ward, enabling the ambulance to be released to meet further need. We welcome the guidance from NHS South West on the timely transfer of patients from ambulance to hospital and support its implementation across the NHS. 11 The same standards of timely triage and transfer should also apply to patients who self-present at A&E with cardiac or stroke symptoms, but do not arrive by ambulance. n Understandable, clear information should be provided for relatives if a patient is taken away in an ambulance Seeing a loved one become ill and be taken away in an ambulance can be frightening and very upsetting. Although someone may be able to travel with the patient in the ambulance, this is not always possible. It is important that relatives or friends left behind are told which hospital the patient is being taken to and ideally are given a contact number for the hospital too. 9. Allender S, Peto V, Scarborough P, Kaur A and Rayner M (2008) Coronary heart disease statistics. BHF: London (Page 80). 10. National Stroke Strategy. Department of Health. December (Page 4). 11. Ensuring timely handover of patient care ambulance to hospital. NHS South West. October

10 3. The right to the best treatment effective therapy for all Improvements in outcomes from cardiovascular disease have undoubtedly been driven by innovation and increased access to better treatments from surgical interventions to new medicines. More people than ever before are being prescribed therapies to manage key risk factors for cardiovascular events, such as high blood pressure (hypertension). The number of operations to treat cardiovascular disease including coronary artery bypass surgery (CABG) and percutaneous coronary interventions (PCI) has also increased. 12 Yet variations in access to interventions remain and seem likely to be a contributing factor in slower progress to address inequalities in mortality between more and less deprived areas. Latest figures from the Department of Health show that the difference in mortality from circulatory diseases between deprived areas and the rest of the country has not yet reduced as much as Government was aiming for. 13 Further efforts need to be made, including addressing inequalities in access to treatment. n Right to best treatment available to proven therapies, recommended by the clinician and tailored to individual patient need wherever you live in the UK Under the proposed new NHS Constitution, patients will have the right to drugs and treatments which have been recommended by National Institute for Health and Clinical Excellence (NICE) for use in the NHS, if your doctor says they are clinically appropriate for you. We welcome this, and it is one of the fundamental rights in our Bill. n For patients with minor stroke and transient ischaemic attack, access to imaging (scan) enabling treatment to start on the day of their stroke For patients with a potential stroke or TIA, imaging is needed to confirm a diagnosis before therapy can be safely started. This should be available within 24 hours of experiencing symptoms. n Full information about the therapies available, and what to expect in terms of impact, side-effects and length of therapy Once a diagnosis has been made, we believe that patients should be entitled to know about the full range of treatment options that may be available to them, and why clinicians may be recommending a particular treatment over another. This is summed up in another right in the proposed NHS Constitution: You have the right to be given information about your proposed treatment in advance, including any significant risks and any alternatives which may be available, and the risks involved in doing nothing. Treatment options should be discussed fully with the patient (and/or carer as appropriate). Information about treatment should be given not only verbally, at the time of prescribing, but also in a form that patients can take away and refer to as and when they need to. Since cardiovascular disease is increasingly a long-term condition, it is important that patients also understand that they may need to be on life-long therapy. 10 THE BRITISH CARDIAC PATIENTS ASSOCIATION

11 n Support for patients in taking their medicines Helping patients, especially those with long-term conditions, in taking their medicines is vital to maximising the chance of that patient having a good outcome and gaining the most benefit from their therapy. It is also central to improving efficiency in the NHS. According to the National Audit Office, wasted drugs cost the NHS at least 100 million a year. 14 The Department of Health has commissioned research to investigate the full scale, cost and causes of drug wastage, and Primary Care Trusts (PCTs) are undertaking a number of initiatives to tackle this. We look forward to the results of these initiatives. n Full consultation on and recognition of patient choice in any proposed change in medication Good medicines management depends on an open dialogue between doctor and patient. It is crucial to enabling the patient to be fully involved in discussions and decisions about their healthcare, and should take place in an environment that allows them to raise any questions or concerns. If any adjustment in medication needs to be made then patients should be fully informed about the reasons for this and able to ask questions. Changes to medications should only be made on clinical grounds. Equally, we accept that patients have a responsibility to take their medicines. We also urge patients to speak to their GP if they are finding it difficult to manage their medications or if they are experiencing side effects so that these problems can be sorted out. 12. Allender S, Peto V, Scarborough P, Kaur A and Rayner M (2008) Coronary heart disease statistics. BHF: London (Page 63).13. Mortality Target Monitoring update to include data for Department of Health. October Prescribing costs in primary care. National Audit Office. May 2007 (Page 6) 11

12 4. The right to joined-up support and care care designed around the patient, not the organisation Too often, cardiovascular patients suffer because of a lack of consistent and understandable support and care in the course of their journey through the healthcare system. We also know that the quality of patient support and care varies across the country, which means that some patients receive a poorer patient experience, and worse health outcomes, than they should. We believe that joined-up support and care at all levels of the patient journey is a right that all cardiovascular patients should enjoy. In particular: n Patients should have a seamless experience throughout their healthcare journey The standard patient journey for cardiovascular patients runs from community care, through primary and secondary care to rehabilitation, and back to community care. It is clear that not all of these journeys run as smoothly as possible. At every stage in this process, the lack of consistency of approach between various health service structures and institutions makes it all too possible that patients specific needs or requirements are not sufficiently taken into account. It is imperative that all cardiovascular patients journeys through the health service must be as seamless as possible. n Support and care must focus on the needs of the patient, not be constrained by organisational boundaries The health service must make the patient the priority. Currently, many cardiovascular patients have their care and treatment constrained by the conflicting priorities and limitations of the health service organisations which should be helping them. It is vital that organisations serve the interests of the patient, and not the other way round. n Every patient should have access to a specialist nurse as a single point of reference for inquiries and concerns Evidence shows that specialist nurses working as part of a multidisciplinary team make a significant difference to the patient experience, but currently not enough patients have access to these nurses. We know from other disease areas that access to a specialist nurse can dramatically improve a patient s experience and care. We believe that a specialist nurse cardiac, vascular or stroke should be made available to all cardiovascular patients to act as a simple point of contact for any questions or concerns the patient has. n All patients should have a needs assessment before discharge at a prehab appointment Too frequently, patients are discharged into the community without a full assessment of their social care needs. This often results in a poorer quality of life experience for those patients, as well as a greater chance of further cardiovascular events both tragic for the patient and their family, and also a frequently avoidable strain on health services. We believe that a prehab appointment for all cardiovascular patients with a nurse or clinician should be mandatory before hospital discharge. 12 THE BRITISH CARDIAC PATIENTS ASSOCIATION

13 n Hospitals must offer advice on what next Many cardiovascular patients feel that health services operate an out of sight, out of mind approach on discharge. A lack of advice and information on living with cardiovascular disease, and how patients can manage their own condition, leaves a number of patients feeling vulnerable when they return to their homes. It also, crucially, makes a recurrence of hospitalisation, and even death, a lot more likely. Every cardiovascular patient has the right to standardised, comprehensive advice on living with and managing their disease at home. n There must be more efficient and timely transfer of information to enable good continuity of therapy There have been many cases where cardiovascular patients have suffered due to delays in the transfer of information on the range of treatments that they require, from secondary to primary care. These blockages, which can affect a patient s continuity of therapy and can therefore have a direct impact on health outcomes, must be removed from the system. Rapid and effective transfer of full information, ideally electronically, between secondary and primary care is vital to the care and treatment of cardiovascular patients. n Copies of treatment plans or records should be given to the patient in language they can understand Cardiovascular patients have a right to be fully informed about their therapy and care throughout their patient journey. We believe it is vital that all patients should be given copies of their own treatment records in language they can understand. We would like to see all patients given a log book containing details of their treatment journey, therapies, interventions, and progress. We also believe that a jargon-busting glossary would be helpful in all information given to patients. n Patient and carers information needs must be met throughout the patient journey To deliver marked improvements in care, each and every cardiovascular patient needs to be empowered with the support and information which allows them to receive tailored, patient-centred care and to lead a full and productive life. High quality information for cardiovascular patients already exists and we call for it to be offered to all patients to support them at every stage of their journey. Adequate information at all available opportunities for patients and their carers should be a fundamental part of patient care. n Sensitive management of palliation and end of life care Every person has the right to comprehensive and sensitive care at the end of life, and cardiovascular patients are no exception. In particular, all cardiovascular patients must: be treated with dignity and respect throughout their palliative care; have their pain managed effectively; and have the right to receive end of life care in the setting and surroundings of their choice. The Department of Health s End of Life Care Strategy provides a helpful template for palliative services, and it is imperative that all cardiovascular patients are treated sensitively and respectfully throughout the final stages of their care. 13

14 5. The right to holistic risk assessment treat the patient, not just their symptoms Health is a much debated and discussed topic in our society. Every day our newspapers are filled with the latest research into disease prevention or breakthroughs in treatment. This is to be welcomed; it means that the public can be made aware of how to reduce their risk of ill-health, and how to spot signs and symptoms of disease at an early stage when it may be more responsive to treatment. Yet there is still much confusion over what risk of disease really means for the individual patient. For example, a 2007 survey of more than 2,000 adults carried out by the BCPA revealed a worrying ignorance about angina the major symptom of cardiovascular disease. More people believed they were at risk of being affected by lung or breast cancer, when in fact angina is much more common. n Communication of what risk means for the individual patient and advice on actions they can take to reduce their risk of a further event (particularly for patients with multivascular disease who are at especially high risk) The national cardiovascular risk assessment programme provides an opportunity to address some of the myths and misconceptions around risk, as well as being a health care intervention in its own right. The one-to-one appointment between nurse practitioner or GP and patient must give time to allow for a full discussion of what their risk may be. n Empowerment and support for patients and carers in taking steps to reduce their risk of a further event Patients risk assessment results should be provided to them in a format that they can easily understand and take away with them so that they are able to refer back to them. All patients will need to know what their results mean for them and what to do next whether that s a lifestyle change or if a medication will be recommended. n Regular follow-up and active management of patients with any form of cardiovascular disease For patients who have cardiovascular disease already, risk assessment really is just the start of the process. Active follow-up and management of these patients will be crucial to minimising their risk of a serious or life-threatening event. Even with the incentive of becoming healthier or reducing your risk of a heart attack or stroke, patients may find it hard to make lifestyle changes or to get used to taking a medication. For some people, simply being told to stop smoking or exercise more frequently or given a prescription will not be sufficient to prompt a change. Investment will need to be made in providing services that support people in improving their health for the long term. 14 THE BRITISH CARDIAC PATIENTS ASSOCIATION

15 n Holistic risk assessment after their first cardiovascular event, including testing for peripheral arterial disease, diabetes, high blood pressure, kidney function, and transient ischaemic attack We believe that responsibility for risk assessment rests with both primary and secondary care. Despite best efforts at prevention, some patients will still suffer a heart attack or stroke. These patients should have their risk assessed immediately after their first event and, ideally, before they leave hospital, to see if they may have multivascular disease (disease in more than one part of the vascular system). Multivascular disease puts patients at significantly increased risk of a second event. Patients with multivascular disease (ie disease in different parts of the body) or other health conditions will have complex needs and are likely to require a number of medications as well as support in lifestyle change. A holistic approach means looking at a patients risk factors and symptoms in the round, assessing them on a variety of measures to ensure the most comprehensive conclusions. Their multivascular disease will also require a multidisciplinary approach, with support from physicians in both primary and secondary care. n Access to high quality rehabilitation services, including physiotherapy, exercise and walking programmes Every cardiovascular patient should also have access to rehabilitation services should they be suitable and wish to use them. The British Heart Foundation estimates that currently 60% of UK patients do not have access to cardiac rehabilitation programmes, despite them being effective and relatively inexpensive. Heart patients who do not take part in rehabilitation are 25% more likely to die in the following two to five years. 15 Likewise, rehabilitation is critical to aiding recovery and managing disability after a stroke, and should be available to patients for as long as they need it. Yet, the National Stroke Strategy recognised that only half of stroke patients had their needs for rehabilitation met in the first six months after their stroke, falling to one in five after six months. 16 We welcome access to high quality rehabilitation as one of the key quality markers in the National Stroke Strategy and are keen to work with Commissioners to support them in commissioning effective services for patients. n Cardiovascular risk assessment for first-degree relatives and partners of patients with cardiovascular disease Families of patients with heart disease should be a key target for risk assessment, since a history of heart disease significantly increases risk for all first-degree relatives. 17,18 However, risk assessment should also be targeted at partners of those with cardiovascular disease, since they may share risk factors that are a result of lifestyle, for example smoking, obesity and/or lack of physical activity. In addition, if a lifestyle change is recommended, patients may find it easier to change and maintain if partners and families also adjust their lives too. 15. Cardiac rehabilitation recovery or bypass? British Heart Foundation, September National Stroke Strategy. Department of Health. December (Page 34). 17. Hawe E, Talmud PJ, Miller GJ, Humphries SE. Family history is a coronary heart disease risk factor in the second Northwick Park heart study. Ann Hum Genet 2003;67: Silberberg JS, Wlodarczyk J, Fryer J, Robertson R, Hensley MJ. Risk associated with various definitions of family history of coronary heart disease. The Newcastle family history study II. Am J Epidemiol 1998;147:

16 Glossary Angina uncomfortable chest pain usually brought on by exercise or emotional upset. The commonest complaint is of a heaviness or tightness in the middle of the chest. The pain may spread to the left shoulder, left arm and hand; neck, throat, jaw, back and/or stomach. The patient may be temporarily short of breath, and/or feel weak and/or anxious. Each year about 20,000 people in the UK develop angina for the first time. Angina is most often caused by the gradual narrowing of the arteries of the heart by materials being deposited in their walls. Over many years, these deposits increase until they reach a size where they actually restrict the flow of blood through the arteries. Circulatory disease an alternative name for cardiovascular disease (see above). Concordance a way of consulting with patients so as to secure their understanding of their condition and their agreement to take their medicine. Concordance aims to improve dialogue between doctors and patients, make most effective use of medicines, and maximise healthcare resources. Holistic risk assessment assessing a patients disease risk by taking into consideration the patient as a whole, rather than single symptoms in isolation enabling a more accurate picture of their risk to be built up. Coronary artery bypass graft (CABG) an operation used to restore normal blood flow to the heart muscle when arteries that supply blood to the heart are blocked or narrowed. CABG surgery involves taking a short length of blood vessel often a vein from the thigh or the lower leg or an artery beneath the breastbone and using it to connect the diseased blood vessel beyond the blockage site. Cardiovascular disease cardiovascular disease means all diseases of the heart and circulation system, including coronary heart disease (angina and heart attack), and stroke. Cardiovascular disease is the most common cause of death in the UK. Hypertension also commonly known as high blood pressure. Blood pressure is the force of blood pushing against the walls of the arteries as the heart pumps out blood. If this pressure rises and stays high over time, it can damage the blood vessels, heart, brain, kidneys and other parts of the body. However, it may not cause any symptoms so it is important for people, especially those over 40, to have their blood pressure measured regularly. Factors which may lead to high blood pressure include underlying disease, obesity, alcohol consumption, high salt intake, stress, lack of exercise, poor diet and family history. Joint Royal Colleges Ambulance Liaison Committee (JRCALC) a national forum made up from representatives of the main 16 THE BRITISH CARDIAC PATIENTS ASSOCIATION

17 healthcare professions relating to the ambulance services and emergency medicine. It provides support to UK Ambulance Services by providing expertise on policy, training, equipment, and healthcare practice. National Stroke Strategy an NHS document offering guidance intended to secure improvements to stroke services, to provide support to healthcare workers, and to provide a guide to high quality health and social care services. Multivascular disease the condition of having vascular disease in more than one place in the body (i.e. a combination of coronary disease, stroke and/or peripheral arterial disease). NHS Constitution a Government document, currently (autumn 2008) being consulted upon in draft form, which sets out for the first time the rights and responsibilities linked to entitlement to NHS care. National Vascular Risk Assessment Programme a Government programme planned for launch in 2009 to identify people at high risk of vascular disease and to encourage and support them in reducing their risk. All people aged 40 to 74 will be invited for a check. They will be asked questions about their life and health and have a number of simple tests (for example blood pressure and kidney function) to assess their risk of developing vascular disease. If they are found to be at high risk, they may be advised on lifestyle changes or prescribed medication. National Service Frameworks these are long-term NHS strategies for improving specific areas of care. They set national standards, identify key interventions and put in place agreed timescales for implementation. Magnetic Resonance Imaging (MRI) a type of scan, used (for example) to see whether a stroke has been caused by a blockage or a burst blood vessel. Imaging helps doctors assess the best treatment for a patient to have and the extent of damage caused by a stroke. Percutaneous coronary intervention (PCI) also known as angioplasty is a technique to help improve blood flow though narrowed arteries. A catheter (a fine hollow tube) with a small inflatable balloon at its tip is inserted into the artery and passed along until it reaches the narrowed or blocked section. The balloon is gently inflated, squashing the fatty tissue to allow blood to flow better. A small metal tube or stent is put in place to keep the artery open, and then the balloon is deflated and removed with the catheter. Peripheral arterial disease (PAD) the narrowing of the arteries (blood vessels) in the body and mainly affects arteries that transport blood to the legs. Along with heart disease and stroke, PAD is the third strand of multivascular disease. Unlike heart attacks or stroke, PAD is relatively unrecognised and, as a result, patients may not be diagnosed and therefore treated. Having PAD puts patients at greater risk of a heart attack or stroke. 17

18 Glossary Primary care health care in the UK is divided into primary and secondary services. Primary care is the term for the health services that you would normally see first when you have a health problem, and are therefore based in the local community; for example, GPs, pharmacists, dentists, opticians and midwives. NHS Walk-in centres and the NHS Direct phone service are also part of primary care. Primary Care Trust (PCT) these organisations are responsible for assessing what services local communities need, and then providing and managing them. There are 152 Primary Care Trusts in England, each one covering a separate local area. They must ensure that there are enough services for people within their local area, and that the services are accessible. PCTs also make decisions about the type of services that hospitals provide and are responsible for making sure that the quality of service is high enough. They also control funding for hospitals. Secondary care is the term for health services provided by hospitals. These are the more specialist health services that you would normally see once you had been assessed by a health care professional in primary care. For example, your GP might refer you to a heart specialist (cardiologist) in secondary care if he or she felt you needed more detailed assessment of your heart condition. Secondary care usually includes services provided by hospitals. Thrombolysis this is the use of drugs to break down blood clots. It is also known as clot-busting. If someone has had a heart attack or stroke resulting from a blood clot, their chances of surviving and making a good recovery is improved if they receive clot-busting therapy early. Transient ischaemic attack (TIA) sometimes called a mini-stroke, a TIA occurs because of a temporary lack of oxygen to the brain. Usually the result of a tiny blood clot or bleed in the brain, it causes similar symptoms to a stroke; for example, weakness or clumsiness in a hand, arm or leg; difficulties with speech or swallowing; numbness or pins and needles; blurred or double vision. Unlike a stroke, the symptoms are transient i.e. they soon go. However, they should be checked out since they can be a warning sign that you may be at risk of a stroke or heart attack in the future. Triage this is the assessment of patients symptoms, to determine how serious their condition is, how quickly they need to be treated and what treatment they need to have. Vascular relating to blood vessels. 18 THE BRITISH CARDIAC PATIENTS ASSOCIATION

19 About the British Cardiac Patients Association The British Cardiac Patients Association (BCPA) is a non profit making organisation run by volunteers and established to provide support to cardiac patients and their carers. You can read more about our work on our website at: Or contact us on: The primary aim of the association is to give support, reassurance and advice to cardiac patients, their families and carers. Whether it be heart attack, angina, cardiac investigations, arrhythmias, stents, implantable cardiac devices or cardiac surgery for bypass, valve replacement, aneurysm, hole-in-the-heart, heart or heart and lung transplant, the BCPA is available to offer free advice and information. BCPA Head Office 2 Station Road Swavesey Cambridge CB24 5QJ We also campaign and contribute to the development of health policy which impacts on the lives of cardiovascular patients and their families. Bristol-Myers Squibb and sanofi-aventis have jointly supported the development of the BCPA Bill of Rights through a grant for publication and through providing editorial input to the final document. The view and opinions expressed in the Cardiovascular Patients Bill of Rights are those of the British Cardiac Patients Association only. 19

20 THE BRITISH CARDIAC PATIENTS ASSOCIATION Job bag number: CV08/1108 Date of Preparation: December 2008