Access to Palliative Care Bill [HL]
Baroness Finlay of Llandaff Excerpts(10 years, 3 months ago)
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Baroness Finlay of Llandaff (CB)
My Lords, I declare my interests as palliative care lead for Wales, chair of the National Council for Palliative Care and chair of the National Mental Capacity Forum.
The only certainty is that every one of us will die. Nothing else in healthcare in the UK applies to 100% of our population. About three-quarters of us will need palliative care input at some level when we are dying. The UK seems to be a good place to die. It was ranked top of 80 countries in the recent Economist Intelligence Unit report. We can be unashamedly proud of our hospices and palliative care services. I am grateful to them all for their support of my Bill.
Let me explain why my Bill is needed, what it will do and why it will not incur costs but will free up resources in the system. The Parliamentary and Health Service Ombudsman’s report, discussed yesterday in the excellent debate of the noble Lord, Lord Farmer, shows all too clearly that provision of palliative care in England is unacceptably patchy. The Minister spoke of our transparency, and although he cited that many report good or excellent care, he admitted that a quarter of bereaved relatives reported that end-of-life care was not good enough. The memory of that experience remains in the minds of bereaved relatives and can blight their lives, particularly if they are children.
The ombudsman reported that in its casework:
“End of life care is, sadly, a recurring and consistent theme”.
Inadequate care is not a few isolated incidents. National audits by the Royal College of Physicians and Marie Curie, and the recent House of Commons Health Committee report on end-of-life care, and many others, all say the same: many places provide excellent care but provision is patchy and varies in quality, accessibility and reliability.
In response to the report More Care, Less Pathway, the Leadership Alliance for the Care of Dying People set five priorities of care in its report One Chance to Get it Right. The Bill is a chance to finally get it right for all. It meets the recommendations that appear consistently in reports, in particular the Health Committee report, What’s Important to Me: a Review of Choice in End of Life Care, which is awaiting the Government’s response, Ambitions for Palliative Care and End of Life Care, from a wide coalition of 27 lead providers and charities, published just this month, and the ombudsman’s report. It would narrow the widening gap in hospice provision between affluent and poorer areas. It would ensure access to hospice care for those with non-cancer diagnoses.
The NHS Confederation describes the NHS as “at a cliff edge” and points out the need to transform the way that the health service provides care. David Behan, reporting on the state of health and social care in England, points to the need for more collaboration between organisations and services; to evidence that person-centred care is better for the individual and can be more economical for service providers; and that safe services require the right staff and skills mix.
We all know what to do—we have strategies, working parties and reports galore—but we are just not doing it all the time, everywhere. Why not? The demands on clinical commissioning groups are great. They are well intentioned, but drowning. They need a clear, simple template to bring up the standard of services. Importantly, patients and their families, faced with all the fears and uncertainties of discovering that this is likely to be their final illness, need and deserve the assurance that their care will be good and that they will not be abandoned or failed in their hour of need, wherever they are, whatever the time or day of the week.
In 2008 we had the End of Life Care Strategy for England and a similar national strategy in Wales that we implemented pan-Wales. Both were reinforced by the NICE guidance on what high-quality palliative care should look like, including that patients’ physical and psychological needs are safely, effectively and appropriately met at any time of the day or night, including access to medication and equipment, and that those whose needs may benefit from specialist palliative care are also offered it at any time of the day or night.
In Wales, we developed a funding formula for palliative care services in 2008 to correct the wide variation in availability. We developed seven-day services, with specialist advice to any healthcare professional at any time of the day or night. We set a benchmark of provision of one actual bed, or a virtual hospice-at-home bed, per 15,000 population; a standard of responding rapidly to urgent referrals; out-of-hours “just in case” boxes for medication for patients at home; a single core palliative care IT record; and staff education initiatives. I am not claiming that we are perfect, but we know that patients consistently rate their experience of care from palliative care providers in Wales as over 9.5 out of 10 across domains of dignity, being listened to, having their concerns addressed and timely care. Indeed, scores of seven out of 10 or below set an alert.
In preparing for today I sent a freedom of information request to all 209 clinical commissioning groups. One hundred and twelve gave information about the number of beds they commission. Benchmarking against Wales on a population basis, 49 have fewer dedicated palliative care beds than Wales and 66 have more. The beds are probably there already, overall. Subject to data validation, clinical commissioning groups’ spend ranged between £15 and £10,504 per patient with palliative care needs, with an average spend of £886 per patient.
Regarding levels of services commissioned, there was wide variation—a true postcode lottery. Some 78% commission 24/7 specialist palliative care advice, but what happens to patients in other areas when staff get stuck and do not know what to do? Only 29 clinical commissioning groups knew how many people they had with palliative care needs, although the Palliative Care Funding Review showed that 0.75% of the population have palliative care needs at any one time.
Narrative from the bereaved and professionals, reported in Every Moment Counts, highlights failures in co-ordinating and personalising end-of-life care, particularly pain relief. Such care is, and should be, delivered by and large by generalists, but often they lack training and confidence to open up difficult conversations, to know how to respond appropriately to distress, or to manage pain urgently.
Actions for End of Life Care set policy aims for 2014 to 2016. It is packed with words such as “promoting”, “supporting”, “facilitating partnership” and “working together”. Its aims are laudable and it would deliver better care if they were all fully implemented. But we do not live in an NHS of plenty; we hear daily of cash-strapped services, of deficits, of failing to meet priorities. There are 15 million people living with one or more long-term conditions. Their admission to hospital is often avoidable.
Cicely Saunders Institute research showed that early integrated specialist palliative care significantly improved quality of life for patients with severe respiratory disease at no additional cost. Sue Ryder’s Bedfordshire partnership provides out-of-hours support, resulting in lower emergency hospital admission rates.
Cancer patients receiving palliative care are half as likely to attend the emergency department in the last month of life. Those with pain and poor care are more likely to have multiple emergency department visits in the last two weeks of life. The Nuffield Trust estimates that over that last three months of life the cost of end-of-life care in a hospice is around £550 per person, compared with £4,500 per person in a hospital—an increase largely due to emergency admissions that could have been avoided.
A new palliative care service for people with severe multiple sclerosis improved pain and care-giver burden, at a total cost saving of almost £2,000 per patient over three months. Coordinate My Care, developed by the Royal Marsden, has ensured that three-quarters of those who died while on the programme did so in the place of their choice, with an average saving of more than £2,000 per person.
Let me explain what my Bill would do. It would ensure that wherever a dying person is, whatever the time of day or night, whatever day of the week, they can receive high-standard care. How would it do this? It would do so by ensuring that commissioners commission a level of service for their populations to meet need. If you are a patient with complex needs and things become difficult, you cannot access a specialist service if it is just not there. You cannot expect staff to meet your needs if they do not know what to do and have no one to ask for help. You cannot access medication at home if your needs change, if there is no local way to get that medication urgently, and if the out-of-hours provider does not carry even the basics because they will not pay £4,504 to be licensed to hold an emergency stock. If you need equipment, you cannot wait days or weeks for it. Electronic palliative care communication systems promote better co-ordinated timely care, avoiding inefficiency and duplication. They need to be everywhere. My Bill would ensure co-ordination so that help is accessible, efficient and can meet needs. It is often said that good care costs less than bad care. Sensitive attitudes and caring behaviours by staff cost nothing, but they transform the quality of the patient and family experience.
Health Education England has indicated that it would welcome this Bill to ensure core education and training everywhere. Currently, only one-fifth of trusts have mandatory training in care of the dying. And research is essential to drive forward improvements; it is not a bolt-on.
There are around 500,000 deaths a year in England. Although three-quarters of people have an expected death, the way the deaths of the other quarter are managed can be improved by lessons from palliative care being applied to ways that family members are informed and supported, and how the critically ill and rapidly dying patient is managed.
The stories of people dying at home in distress through failures of commissioning have to stop. We know what to do but we are just not always doing it. At the end of the day, no amount of nice words will make commissioners ensure that they have in place the services to meet their population’s needs.
Why legislate for this and not for other services? It is simply because everyone will die. No other area of healthcare has 100% certainty, so this will not set a precedent. This is the time to make the good care of everyone who is dying a given. I beg to move.
Baroness Finlay of Llandaff
My Lords, I am most grateful to everyone who has spoken in this debate. They prepared for it carefully and highlighted the inequities in provision. I thank all those who support the Bill. I believe that patients and relatives out there, hearing that the Government do not support legislation that would drive up standards of palliative care provision, will be horrified. This has not been plucked out of the air. In Wales we have been doing this for seven years. It is a template as the result of a natural experiment between England and Wales. Through the Bill, we are trying to share best practice.
The Bill is indeed only skeletal. Since coming to this House, I have learnt that you do not put into a Bill what can go in guidance. The issues that have been raised by Peers over possible amendments I would certainly expect to see set out in guidance because that is the right place for them. The reason is that systems change over time, healthcare professional responsibilities change, and you do not want to be locked into something that becomes archaic.
This is not the Liverpool care pathway in another guise. In fact, I have to say publicly that we did not adopt the Liverpool care pathway in Wales because we predicted that it would run into trouble. We developed a slightly different, modified system of our own.
The principles of the Health and Social Care Act 2012 have to work out, and over time they will, but this Bill will not stifle innovation. In fact, it will make sure that there is innovation because research has set out in the Bill. It will make sure that those who provide specialist care have to keep up to date with what is going on and participate in research. No longer will they be able to duck out of it using all kinds of weasel words and excuses about wanting to protect patients from people who want to find better ways of care and thus improve it. Those people are called researchers who, like those at the Cicely Saunders Institute, have delivered most of the data to provide the transparency the Government want. I am greatly indebted, particularly to Dr Felicity Murtagh, Professor Irene Higginson and other colleagues there, who have provided me with an enormous catalogue of evidence to check out what is in my Bill.
As for consent and control, we already have the framework in place. No one should be treated against their wishes, so we have a framework that enables people to make advance refusals and statements of wishes. They can do it now, when they are well and long before disease strikes, and they can make changes if they change their mind. That is what the Mental Capacity Act 2005 is all about. It ensures that no one is treated against their will. I know that I now have an uphill struggle in trying to get it properly implemented, but it is a challenge that I take on willingly and I am humbled at being given the chance.
I am also alarmed at the thought of care being discriminatory against people on the basis of age and so on. As for people wanting to be cared for at home, I am cautious about anything that tries to put into legislation specific pathways of care because people change their mind. I have had patients change their mind about what they want and where they want to be in their dying moments—not about the place of care, but even about trying chemotherapy or asking for a second opinion about surgery. We have to be flexible all the time with our patients until they are dead because they may change their mind about what they want in the last few minutes. It may be a minor issue, such as whether the family is in the room or out of it, but those wishes need to be respected.
I am saddened that some have tried to link this Bill with the debate on the Assisted Dying Bill. The House of Commons looked at the proposal for physician-assisted suicide very comprehensively and has spoken very clearly. That Bill is unsafe and should not be brought back into either House of Parliament. It is actually an abuse of the House even to think about doing so. If people want assisted suicide, then go away and write a Bill that is safe, but do not saddle doctors in palliative care with it. They are the group that wants to provide better care and do not want to be involved in such a process. Those doctors also have the right to behave ethically and to do what they want for their patients; they do not want just to give in to demands.
I am also saddened that the Government have been so blunt; they will not even look at ways to improve the situation. We will watch the position over time. I hope that the Bill will have a Committee stage because I want to debate some of these issues further, and I also want transparency. But above all, I want every person dying in this country to be secure in the knowledge that they will get the care they need, but I am afraid that the response I have had today from the Government does not give me that assurance.
Child Health: Play
Baroness Finlay of Llandaff Excerpts(10 years, 4 months ago)
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The Lord Privy Seal (Baroness Stowell of Beeston) (Con)
My Lords, we have not heard from the Cross Benches on this Question yet.
Baroness Finlay of Llandaff
Do the Government recognise that there is another group of children who must be considered—those who have illnesses limiting their mobility for a variety of reasons, some acquired and some congenital? The role of physiotherapy in paediatric departments is essential to ensuring that they can grow and develop and become as independent as possible. I declare my interest as president of the Chartered Society of Physiotherapy.
Lord Prior of Brampton
The noble Baroness makes a powerful and strong point. All I can do is agree with her 100%.
Health: Children
Baroness Finlay of Llandaff Excerpts(10 years, 5 months ago)
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Baroness Finlay of Llandaff (CB)
Do the Government accept that intrauterine exposure to environmental toxins, psychological stress and nutritional deficiencies in the mother have long-term health effects on the child, as well as problems that arise in the immediate postnatal period? Will the Government therefore undertake to support epidemiological research in these areas, linked to their reviews of maternity services?
Lord Prior of Brampton
I am well aware of the impact on the health of children before as well as after they are born. I cannot give the undertaking that the noble Baroness would like me to give here today but I am very happy to pick it up with her outside the Chamber.
Health: Lymphoedema
Baroness Finlay of Llandaff Excerpts(10 years, 5 months ago)
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Baroness Finlay of Llandaff (CB)
My Lords, like others who have spoken, I am most grateful to the noble Lord, Lord Hunt of Kings Heath, for introducing this debate so comprehensively. He gave us a very good tutorial in the pathophysiology of lymphoedema. I declare my interests: I am president of the Chartered Society of Physiotherapy and the clinical lead for palliative care in Wales. I will be speaking about our Welsh service because we have a strategy and people can learn from it, just as the noble Lord, Lord Maginnis, outlined the one for Northern Ireland, where the advances have happened because of having a national strategy, just as we do. Unfortunately, as has been said and as personal stories have outlined, there is inequitable access in England because there is no strategy and there are no NICE guidelines.
What has been our experience in Wales? We published a national lymphoedema strategy in 2009 and invested £1 million in 2011 to focus on a clinically effective service that had to be value for money. There are now 9,300 patients with lymphoedema, which works out at 450 new referrals each month to the service. Fifty per cent are cancer-related and in 93% the lymphoedema is secondary to another cause, rather than being primary lymphoedema. Forty-three per cent of the cases are considered complex or severe and there is a direct correlation with age, 86% of the patients being more than 51 years old.
However, the waiting time has gone down since we have had our strategy. In 2011 it was 24 weeks; in 2015 it is 14 weeks, with 95% of patients being seen within 14 weeks. Palliative patients are seen within two weeks and urgent patients within four weeks of referral. Garment dispensing has radically improved. In 2011, 50% of garments were wrongly dispensed; it is now only 5%. The waiting time for garments has reduced from 42 to 10 days. With our surgeons, we have also been able to develop a unique microsurgical technique, which is a real pioneer and has shown a 96% reduction in cellulitis episodes and a 70% reduction in the need for compression garments. I do not think that investment in research would have happened without the rest of the clinical infrastructure being in place. It is estimated that there has been an overall saving, per patient each year, of more than £9,700, while the national contract for purchasing garments is saving £135,000 annually. The cost pre-service was more than £89,500,000 but post-service it has fallen to £41 million, so there is an annual saving of more than £48,500,000 from having a co-ordinated strategy in place.
Let me turn back to England. It is a myth that lymphoedema is so rare. A recent study by Moffatt and Pinnington noted that almost four in 1,000 people have lymphoedema, which is three times the current estimate. This means that somewhere between 72,000 and 227,000 people in England have it, making an average of somewhere around 700 patients per clinical commissioning group. Cancer-related lymphoedema gets the publicity but is only 25% of the workload. Breast cancer, about which most of the public-facing work in educating patients has been done, actually represents 14% of the workload in England.
One of the difficulties is obesity, which has a serious role. I know that when I was setting up the lymphoedema service in the cancer centre, we would get patients referred and, quite often, their bigger problem was obesity. The lymphoedema was very much secondary to it and almost unmanageable until the obesity was tackled. With the predictions of increasing obesity that is a major problem, as 63% of lymphoedema patients have been found to be obese and 21% severely obese. The noble Baroness, Lady Smith of Newnham, who—for those who cannot see her—is very far from obese, outlined that the patients’ experience is poor. That is borne out by all the other data. As has been said, 80% of people have had to take time off work. Half have uncontrolled pain of some sort and about a third were told that they have lymphoedema but have not received treatment.
There is a lack of a national contract for compression garments, which means that prices are inappropriately high. As the noble Baroness outlined so clearly, patients with a condition that appears to be relatively minor feel quite guilty when they are referred to a service linked to a hospice but are also quite often really scared that there is something else going on that they have not been told about.
Services are spread across numerous sectors and there is currently no audit surrounding the level of practitioners’ training or skills. There are then high knock-on costs from primary care into secondary care. This patchy service has effectively meant that there is discrimination against those with non-cancer lymphoedema, because a lot of services have been set up that are linked to cancer centres. The other problem is that there has been a 2.37% reduction in the lymphoedema workforce from 2010 to 2011. The services that are there are vulnerable as a third of them are run by single-handed practitioners. If that person goes off sick, retires or leaves, there is a tendency for that service to fold.
I suggest that there is a need for a national strategy, which should follow the lymphoedema framework and would: identify those who are at risk and their clear clinical grades; empower people who are at risk of or have lymphoedema to manage their own conditions, which frees them up from dependency on the health service; have integrated community, hospital and hospice services, with high-quality clinical care, particularly for the very early management of cellulitis and erysipelas; provide compression garments—the right ones, properly fitted by people who know what they are doing; and require multiagency health and social care. I would stress that some of the best services around the UK have been led by physiotherapists rather than by clinicians of other sorts. I want to give credit to them, because they really have been pioneers.
As for education, since the BMJ produced a learning module, more than 2,000 doctors have completed it. They have sought this out and recognised that they need to learn about it. The noble Baroness, Lady Masham, vividly described the problems when lymphoedema is not properly diagnosed and treated. The National Cancer Survivorship Initiative has shown how early diagnosis and symptom management through improved access to information and treatment would heavily reduce escalation and the need for hospital admissions, as well as reducing morbidity and complications.
The NHS could save £100 in reduced hospital admissions for every £1 spent on lymphoedema treatments that limit swelling and therefore avoid complications. I understand that England currently spends more than £178 million on admissions due to lymphoedema, with a rise in costs of £7 million from 2013 to 2014, equating to more than 22,904 additional admissions. It is predicted that the NHS, as the noble Lord, Lord Maginnis of Drumglass, said, could save £32 million a year by having a proper national strategy that provides a national service. That would mean that patients have fair access, rather than feeling discriminated against due to either the type of lymphoedema they have or where they live. It just does not make sense not to proceed with a strategy.
NHS: Reform
Baroness Finlay of Llandaff Excerpts(10 years, 7 months ago)
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Lord Prior of Brampton
I can only agree with the noble Baroness on bureaucracy. The new body that we are setting up to look at incident reporting, as recommended by the PAC, will only look at big incidents so will not be an added bureaucracy for the day-to-day running of a trust. I am always struck by the figure that nurses spend only between 70% and 80% of their time dealing directly with patients because they are dealing with bureaucracy. The bureaucracy argument falls into two parts: it is partly about the way hospitals run their affairs and partly about external regulators. We believe fundamentally in intelligent transparency. I see the CQC, for example, as less a regulator and more a means of providing intelligent information to boards of hospitals and to patients. But I take on board what the noble Baroness says. We will do everything we can to reduce the level of bureaucracy.
As far as the timetable is concerned, junior doctors will switch over much more quickly than consultants, because they turn over much more quickly. It will take time for consultants to move over to the new contract, but we hope that we can make it more attractive to consultants and that it will be more of what I would call a professional contract, so that existing consultants will switch over to it as well as new consultants. We will have to watch that very carefully.
Baroness Finlay of Llandaff (CB)
The way that the Minister has been speaking has made it sound as if the majority of consultants do not work on weekends, and I question the validity of that. The consultants who are on and on call are dealing with emergencies at the weekend and are very often in. However, without diagnostic back-up, without physiotherapy and occupational therapy, without specialist nurses and without community services to which they can discharge patients, they effectively have to function with one hand tied behind their back—sometimes both. You cannot provide modern medicine without that broader team. If you are going to free up hospital beds, you have to be able to discharge patients safely, knowing that they will have the care they need. The 24 hours post-discharge is when patients are at their most vulnerable.
I will question one thing the Minister said. He gave a six-week timeframe for the BMA. Does that also apply to the NHS Pay Review Body negotiations? What will be done to make sure that all the other staff also move on to contracts that will provide that infrastructure, right through from operating department staff to, as I said, allied healthcare professionals and so on?
The Statement referred to end-of-life care. Could the Minister inform the House when there will be a response to the report What’s Important to Me. A Review of Choice in End of Life Care, which was undertaken for the National Council for Palliative Care? I declare an interest as its incoming chairman. It has been submitted to the Department of Health, but there has still not been a response to it, even though it has been universally welcomed by both providers and patient groups.
My last question relates to digital innovation. I welcome the fact that the noble Baroness, Lady Lane-Fox, with her tremendous skills, will be brought in. What are the Government’s targets and how rapidly are they planning to roll out digital innovations? Will they undertake in the process to decrease the paper-load bureaucracy, so that staff can be freed up to deliver front-line patient care, and are not caught by risk-averse processes and procedures that force them to spend a lot of time in documenting or double-checking, when the evidence base for that improving patient care is extremely thin?