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Palliative Care

rose to call attention to the availability of palliative care; and to move for Papers. The noble Baroness said: My Lords, on this sad day I would like to begin by paying tribute to the rail company that brought me here, First Great Western. I have seen at first hand how it coped as today’s events unfolded. I pay tribute specifically to the staff of St   Mary’s Hospital in Paddington. I have heard how brilliantly they have coped today. I welcome, and look forward to, the speech of the noble and learned Lord, Lord Lyell of Markyate, which we shall hear later. It is an honour to open the debate on this important subject and I declare all my interests in all aspects of palliative care. Britain has led and continues to lead the world in the provision of palliative care, but, sadly, specialist services are inequitably distributed, and this may worsen. Training in the basics for the vast majority of doctors and nurses is grossly inadequate, and the lack of integration of social care with healthcare is denying people dignity. We will all die, more than half of us with a terminal phase to illness. We want to be cared for adequately in a way that gives us real choices about place of care, what we want done and what we do not want, sensitive to those cultural and religious needs that so many people have, safe in the knowledge that we will have good symptom control to allow us to complete our last tasks of life with dignity, and that those we love will be supported in grieving. Palliative care is not just about dying. Indeed, when someone is actually dying the opportunity really to make a huge difference has often been missed. It is an essential approach to care from the time of diagnosis, as so often when cancer or other disease is diagnosed it is non-curable and the most that active anti-disease treatments can do is to postpone death by weeks or months. It is only by integrated care that the symptoms of advanced cancer can be tamed: more than 80 per cent of patients with cancer experience pain, and more than two-thirds of those with advanced non-malignant disease also have pain problems. Almost half of patients nearing death are breathless, and half of cancer patients and a quarter of non-cancer patients have nausea and vomiting. Depression hits two-fifths of patients. Palliative care is not geriatric care. In my own Marie Curie hospice, the average age of patients is 72 years old. Patients should be assured that they can plan to meet their goals in the unpredictable time left and should know that the service will support them. Indeed, unpredictability abounds because it is notoriously difficult to prognosticate with any accuracy. I have helped to arrange weddings in those last days or weeks of life, sometimes within hours: one young woman had her five children as bridesmaids for her wedding in the hospice. A father baptised his son as his final gift. Parents leave memory boxes for their children with letters to be opened on key birthdays, and other people describe a peace of mind that comes from being assured of attention to their needs. Unexpected time becomes precious: one man whose wife lived six extra weeks after an intervention said:"““Six weeks might seem like no time to you, but to us it was lifetime. We did so much talking and I am now a different man, able to bring up the children, thanks to those six weeks””." The World Health Organisation defines palliative care as,"““the total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families””." Britain has led the rest of the world in the care of those facing death. We have educated doctors, nurses and other healthcare professionals from around the globe. Pioneers such as Dame Cicely Saunders have been visionary role models in many countries. We know how to control pain, even difficult neuropathic pains, control other symptoms, such as breathlessness and sickness, and avoid constipation and pressure sores. Crucially, we have proven that you can enhance independent quality of life, despite life ebbing away. It has been estimated in Canada that, on average, five people are deeply affected by each person’s death and another 25 are also affected. So make no mistake: bad care does not die with the patient. It lives on in the memories of at least five, and possibly 30, people, altering their view of the future that they want for themselves. The House of Commons Health Select Committee report identified gross deficiencies in the provision of palliative care in the UK. The National Audit Office’s report also makes salutary reading. It catalogues half of hospital patients experiencing moderate to severe pain, with over a quarter of those feeling that hospital staff did not do all they could to try to relieve it. One in three cancer patients felt so anxious and/or depressed that they needed help to cope, but one fifth of those reported that hospital staff did not do all they could. The Government must be congratulated because they have certainly recognised and fostered palliative care, as demonstrated by their provision of an additional £50 million per annum for specialist palliative care since 2003–04. In 2003–04, that £50   million was allocated to the 34 cancer networks whose palliative care plans were monitored centrally. In 2004–05, it was allocated to the primary care trust baselines. It is ring-fenced until 2006–07, but then it enters the general pot. Will it continue to iron out inequities? I fear that it will be swallowed up in the financial deficits that PCTs face, and will not help iron out some of those inequities in provision. In their manifesto, this Government notably and importantly committed to:"““double the investment going into palliative care services, giving more people the choice to be treated at home””." So how is this going to happen? How is this investment going to be made? In 1995 the Calman Hine report recommended a core multi-professional team to be integrated with cancer care. Why is that not ubiquitous? In Cardiff’s Velindre Cancer Centre, where I work, there is a ward for the sickest patients in the hospital, where all the patients are automatically under palliative care as well as oncology. The oncologist steers the anticancer treatments and, secondarily, we attend to other domains of their needs. But that model is almost unique. Only 228 hospitals have palliative care support teams, or support nurses, to ensure that palliative care advice and input is readily available on the wards. Even in those hospitals, the staff will tell you that care sadly varies widely from one ward to another. However, gross inequities in provision abound on a wider scale. The needs assessment developed by Peter Tebbit within the National Council for Palliative Care has shown wide variations in provision. Wide variations exist in palliative care resource needs per head of population because mortality rates and social depravation vary. For example, the Northern Cancer Network needs 60 per cent more service provision than Thames Valley—but it does not have it. Some PCTs provide a service twice as extensive as their neighbouring PCT despite similar patterns of need. Historically, hospice developments were ad hoc—often, driven by strong and highly motivated personalities. But those days must be over, as we try to plug the gaps. Some organisational issues aggravate the gaps in provision. Out-of-hours cover is patchy and the changes in primary care provision out-of-hours have aggravated those gaps. Perhaps nine-to-five weekday working for specialist palliative care nurses is over, as the need for services, particularly out-of-hours, remains unmet. No amount of cold education will ever alter this. Such provision, out-of-hours, needs to be built into contracts in the future because crises arrive at nights, at weekends or at bank holidays. These times tax patients and their carers to the limits. Over half of all cancer deaths, and those from other causes occur, in hospital. Yet people so often state that they want to spend their last days at home. Marie Cure Nurses aim to help this, caring for half of all cancer patients dying at home. They remain with a family when things are difficult, but in the last year the contracting from PCTs for this service has fallen in real terms, as there has been no uplift to account for the nurses’ pay award. Only 25 per cent are at home when they die, although 64 per cent of the population expresses a wish to die at home. Yet inequities also occur by age and sometimes by ethnic or cultural group. A Help the Aged report identified the needs of older people who are dying, and that they are often ignored. They are, in the words of their report:"““more likely than younger people to experience multiple medical conditions, repeated hospital admissions, lack of preventative planning, under-recognition of symptoms and physical or mental impairment. They are more likely to experience social isolation and economic hardship.””" However,"““they are less likely than younger people to receive support at home, in hospital or in a hospice, or to receive attention from GPs or district nurses during the last year of their lives. Older people are often described as the ‘disadvantaged dying’.””" Lack of social care hits the elderly hard. No matter how many healthcare professionals visit, your dignity is undermined if the food in the fridge is going off, if your hair is unkempt, your nails uncut and your underwear unwashed because social care is not there. Yet the young are also hit by such failures. Those with motor neurone disease cannot wait weeks for equipment or adaptations to the home. As one patient so eloquently stated, ““By the time the changes are done, the disease has raced ahead, and it’s too late!”” Equipment fails to arrive on time, but then it often remains uncollected after a patient dies, depriving others and providing painful memories to the bereaved of disability that detracts from memories of the essence of the person they loved. One patient’s wheelchair—and I know about this first-hand—was lost by the service, just when his wife was herself dying in hospital. That cannot be acceptable. Some parts of England have efficient, rapidly responsive services. Why not everywhere? I turn to paediatric services. There is an acute shortage of paediatric palliative care medicine consultants in this country, yet many children are dying with predictable end points as well. Equipment, arranging social care and sorting out continuity of care eligibility often delays the discharge from hospital to home, so a unique window of opportunity can be missed. Time is not kind to these patients. They cannot wait in a queue behind planned discharges from the hospital sector. So, we have inequities by postcode, by place of care, and even down to differences on different wards within the same hospital; by age and by disease group. Over 95 per cent of patients admitted to a hospice have cancer. Many neurology and cardio-respiratory services have not pushed for specialist palliative care availability in the same way as cancer services have, so those patients with non-cancer diagnoses are left to suffer unnecessarily. Are there solutions and is there a way forward? I urge the Government to work in partnership with the voluntary organisations such as Marie Curie Cancer Care to develop the answers that are so sorely needed. More resources are definitely required. The national tariff on the pricing of services may help, provided that it is sensitive enough to ensure that the needs of some patients for longer in-patient stays are recognised without creating a perverse incentive that fails to get home fast those who wish to go. However, it is fair to say that it has been estimated that at the moment, the   charitable sector is providing the equivalent of £100 million-worth of baseline care which would otherwise fall to the NHS. I also make a plea to the Minister that the Community Care (Delayed Discharges etc.) Bill should be revised so that those in hospice beds would now be included. If staff are trained routinely to ask patients about their pain, they are told, but those patients who are not asked about it will simply suffer in silence. The pain score should become a routine observation in the same way as the temperature and pulse rate. Sadly, Shipman has done untold damage to pain control. Some GPs now report feeling fearful of prescribing adequate doses of analgesics as there is a perception that the GMC is just waiting for another Shipman case. But all the evidence shows clearly that you do not shorten life by correctly titrating up morphine and other drugs to achieve pain and symptom relief. But the educational push needs to continue and the rumours that somehow you can kill patients with good symptom control must be stopped. You do not. The National Institute for Clinical Excellence has   produced palliative care guidance. Professor Mike Richards has driven forwards the Government’s End-of- Life care initiative, with the Gold Standards Framework covering communication, co-ordination, control of symptoms, continuity of out-of-hours care, continued learning, carer support and care in the dying phase. And in that dying phase, during the last 48   hours of life, the Liverpool Care Pathway has been shown to make enormous improvements to care in a cost-effective manner. So how can we ensure that this is available to all? I was not a fan of targets, but I eat humble pie. They have achieved changes. After years of encouraging more education in the basics of generic palliative care, is it not time to ensure that core general palliative care training is part of revalidation so that every service will have staff with up-to-date knowledge and attitudes? We know what to do, but we are not doing it for all those who could benefit. Do we need legislation to ensure that those who need good end-of-life care can always access it? I beg to move for Papers.