Hospices and Palliative Care Services
Baroness Finlay of Llandaff Excerpts(14 years, 1 month ago)
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Baroness Finlay of Llandaff
My Lords, in securing this debate, the noble Viscount has exemplified his tireless work for hospices and is to be congratulated. Hospices’ futures depend on stable funding. The service exists to help people to live as well as possible until their natural death and to support their family, including children.
The report of the Palliative Care Funding Review, which was chaired by Tom Hughes-Hallett from Marie Curie, has drawn heavily on the Welsh model. I declare with a certain pride an interest as the chief architect of that model. We realised that every patient with complex end-of-life-care needs, wherever they are and whatever their diagnosis, should have access to specialist palliative care advice and support to underpin general services in primary and secondary care, irrespective of the bed that they are in, be it at home, in hospital or in a nursing home. We realised also that there will always be some who need to be in specialist hospice beds because they have complex needs. However, the ad hoc way in which hospices have grown up means that some areas have good provision while others remain devoid of it.
We wanted fairness of access for patients, so we developed a funding formula. We calculated that there needs to be one hospice bed or a hospice-at-home virtual bed per 15,000 of population. My rough calculation for England suggests that the numbers are pretty good but poorly distributed. We stipulated the minimum number of specialist staff needed for community palliative teams to oversee hospice beds and for different hospital support teams. This indicated the core service that the NHS should fund, irrespective of provider. If charitable funding dried up, there would still be a core service in every area.
We instigated seven-day working by specialist nurses, costing around £10,000 per team—that was all—with 24/7 on-call consultants to advise any healthcare professional across Wales by telephone or even visit if necessary. In hospitals, these nurses, visiting the wards and sometimes going to A&E, have facilitated discharge to home, and patients have not needed to be admitted. They have also set up home care, so that when the patient gets home everybody is expecting them.
Every dying person with complex needs should know that specialist help is available if needed. Our national standard is that every referral must be responded to within 48 hours. Fortunately, almost all are seen on the same day or next day; a distressed dying patient cannot wait. Direct patient and family feedback provides dynamic quality assessment, while service data inform performance monitoring.
Three years on, we are convinced that per-patient payments will be an accounting nightmare. The complexity is too wide-ranging. Patients need a rapid response and true choice over place of care and hospices need funding stability. End-of-life care cannot be left just to voluntary donation; its commissioning must be a core duty of budget holders.
Health: Passive Smoking
Baroness Finlay of Llandaff Excerpts(14 years, 2 months ago)
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Earl Howe
My Lords, of course my noble friend is right that there are legal issues inherent in this whole question, which we will look into very closely.
On his first point, it is always a pleasure to hear of someone who has lived a long time in good health despite smoking. However, I say to my noble friend that the Royal College of Physicians estimates that more than 300,000 primary care consultations are recorded each year across the UK for conditions in children due to exposure to second-hand smoke.
Baroness Finlay of Llandaff
Given the risk to children that has just been highlighted of exposure to passive smoking, what action do the Government intend to take against smoking in cars—which is a very restricted space, particularly when the windows are closed—and also in schools or among young people generally, so that young people have the courage to challenge when somebody lights up in close vicinity?
Earl Howe
My Lords, we have no plans to legislate further for banning smoking in cars. As she will know, when a car is used as a workplace smoking is illegal, but when a car is being used privately that is a different matter. We do not intend to legislate.
On messages in schools, we know that youngsters are concerned about parental smoking. In fact, the younger the child, the more concerned the child tends to be. Schools are encouraged to include advice on smoking in the PSHE curriculum.
Public Health
Baroness Finlay of Llandaff Excerpts(14 years, 2 months ago)
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Earl Howe
My Lords, my noble friend asked a series of important questions. He has put his finger on how, in many senses, the system will be joined up. He is right to say that Public Health England will be instrumental in supporting local directors of public health in their task. We envisage that Public Health England will create a common sense of purpose and values among a widely dispersed group of workforces. We will develop a workforce strategy with representative organisations and publish that next year. That, I hope, will help to support a smooth transition. At the same time, we do not want to cramp the style of local directors of public health. Much will be down to local decision-making and, in particular, the individuals now employed in PCTs will be looking to transfer across to local authorities as the size and shape of public health teams materialises over the months ahead. We are not going to prescribe from above in determining how public health teams should be configured in local authorities, but there will be considerable support in the advice and expertise available from the centre.
Baroness Finlay of Llandaff
There is much that is welcome within the report but I have some reservations. When the directors of public health are employed by local authorities, will the local authorities also be responsible for their appraisal? Who will be responsible for their revalidation? Will there be audits of the impact of any interventions? Will there be co-ordination of those audits to see which interventions are the most effective? Will there be research in public health to find the most effective ways of guiding people’s behaviour so that they contemplate change? The word “nudge” has been used in the Statement. This goes back to Julian Tudor Hart’s work, many years ago, highlighting the inverse care law. It will be really important that directors of public health do not become isolated in a local authority where they find it difficult to bring about change.
Earl Howe
My Lords, the noble Baroness will see when she has a chance to read the relevant section of the White Paper that local directors of public health will be jointly appointed by Public Health England at the centre and by local authorities. We see that as important because they will be fulfilling multiple roles. For example, the health protection role fulfilled by Public Health England will have to be delivered at a local level and, to that extent, it is important that directors of public health are accountable upwards to the centre. At the same time, in much of their work, particularly on health improvement, local directors will be accountable to their local authority and their local population. There is a dual accountability working here.
On appraisal mechanisms, I think it is too soon to say, as we have not worked out the detail of that, but clearly, that will have to reflect the dual accountability I mentioned.
On the audit question, we are issuing a paper about the outcomes framework. The way in which outcomes are assessed and audited will be key to ensuring that the interventions and initiatives that are put in place are evidence-based, that they are relevant and that they have an effect. I hope that the noble Baroness, for one, will feed into that consultation.
Finally, the noble Baroness asked about research. There will be two main engines for public health research. One is the NIHR school for public health research, which will consist of leading academic centres of excellence focusing on evaluation and what works practically and can be applied across the whole country. The other will be the policy research unit on behaviour and health, located in the department, the opening programme of which will initially focus on four behaviours; namely, diet, physical activity, smoking and alcohol consumption. It is very important that we get closer to what motivates people to change behaviour.
Health: Academic Health Partnerships
Baroness Finlay of Llandaff Excerpts(14 years, 2 months ago)
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Baroness Finlay of Llandaff
To ask Her Majesty’s Government how they propose to preserve United Kingdom academic health partnerships.
Baroness Finlay of Llandaff
My Lords, I declare my interest as a clinician and as a former vice-dean of a medical school. Clinical academics are at the heart of academic health partnerships. Traditionally, clinical academics have mostly been doctors and are the clinical academic leaders of today. But other health professions are joining this group who are employed by universities to research and teach, as well as having direct patient responsibilities. Medical schools are at the heart of this unique position that juxtaposes research abilities within the clinical context, stimulating questions that need answering and permitting studies to be planted in reality.
The UK has a fantastic record in biomedical research. Some 10 per cent of all the academic output in the world is from the UK, but we have less than 1 per cent of the world population. Twelve per cent of listed medical research citations are from the UK, second only to the US, and 19 of the 75 most widely prescribed drugs were discovered here. Investment in biomedical research made over the past 20 years is reaping dividends. The challenge is to get the findings translated into routine practice. Research assessment exercises have tended to steer towards basic science as it is easier for the RAE than applied research. Simultaneously, NHS management has been driven by targets. It is the UK medical schools that sit in the middle of this financial tension. Although tension can be creative, there is a danger that knee-jerk financial responses can undermine long-term, potentially very profitable investment if academic and clinical medicine are forced apart by short-term commissioning decisions.
Countering this pressure has been the National Institute for Health Research, in large part inspired by Dame Sally Davies. Its impact has been phenomenal. Schemes it has supported are being copied and rolled out in the devolved Administrations. Clinical academic training fellowships are attracting increasing numbers of the brightest young doctors as state-of-the-art activities are introduced into trusts, adherence to guidelines improves and evidence-based best practice spreads. The five major health sciences centres in England, Imperial College, King’s College, University College London, Manchester and Cambridge, are direct products of this initiative. They build on the juxtaposition of research and direct clinical care, with major laboratory research linked to clinical practice. But there is also a major benefit to UK plc from all the other academic centres. So I ask the Minister for reassurance that the Department of Health is working closely with the Department for Business, Innovation and Skills to maintain our profitability from clinical academia.
There is good evidence that clinical outcomes are better from all routine clinical services that are research and teaching active. Indeed, that was recognised in the White Paper. Medical schools responsible for the undergraduate teaching of tomorrow’s doctors are all active in research and they have clearly demonstrated that investment pays dividends. For example, every pound of public money invested in cardiovascular research has, after 15 to 20 years, generated a benefit of 39 pence annually in perpetuity. Recent translation of research into practice is illustrated by the reconfiguration of stroke management in London, with better clinical outcomes now that many stroke units have been rationalised down to centres managing hyper-acute stroke providing rapid thrombolysis, decreasing morbidity and long-term care needs.
We take for granted the many previously unimaginable surgical procedures and drug treatments that are now an everyday occurrence. When people are seriously ill they want a specialist to guide their management; someone who is research-active in the area of their disease. I ask the Minister how the importance of academic medicine will be recognised by the GP consortia, many of which will be led by GPs who are not involved in research. How will public health research be supported and financed as public health moves to local authority control?
The health and wealth agenda is served by maintaining the momentum in clinical academia, yet we are already seeing an adverse drift. The pharmaceutical industry is drifting off to other countries with consequent revenue and job loss to the UK. In 2002, 6 per cent of the clinical trials in the world were conducted here but by 2007 this had fallen to 2 per cent.
The recent NHS White Paper speaks strongly of the benefits of research with 10 distinct references to it. It states:
“The Government is committed to the promotion and conduct of research as a core NHS role”.
It goes on to recognise that, particularly in lean financial times, research can provide routes to improve health outcomes and reduce inequalities. Following the consultation on the White Paper, can the Minister reassure us that the commitment to those centres that develop research and unlock synergies between research, education and patient care, remains stronger than ever?
Medical schools have been working with their NHS university hospital partners to plan for the future. They recognise that health and higher education have flourished with political support over recent years and that the global recession’s impact on the UK’s economy will change this growth trajectory. Future success and sustainability require that the core businesses of teaching, research and healthcare delivery are aligned to weather the changes in the financial climate. Collaborative working, not competitive vying for resources, will be the way forward.
Within the NHS the governance system should be based on proportionality of risk rather than “one size fits all”. Clinical research ethics committee processes have speeded up but bureaucratic blocks to research still exist so that opportunities cannot be grasped even though economic recovery will depend on them. Inspection processes, such as the Medicines and Healthcare products Regulatory Agency inspections, can seem excessively laborious. I ask the Minister: what levers are there in the new NHS to address such blocks to innovation and research?
The new GMC document, Tomorrow’s Doctors, requires the doctors of the future to focus on leadership and a lifetime commitment to improvement in recognition of the importance that such a skilled workforce will bring to the wealth of the nation. Training does not end with a medical degree. Postgraduate training takes years and currently it is the responsibility of postgraduate deans, but where will the postgraduate deans sit? They are not mentioned in the White Paper.
Clinical academics emerged during the postgraduate years. The Wellcome Trust postgraduate fellowships aim to recognise and grow the UK’s future medical academics. As specialty and primary care trainees develop an understanding of applied research when working clinically, and as strategic health authorities disappear, it makes sense for universities to be persuaded to house the postgraduate deans, who will not usually be RAE returnable and so will need to have some honorary contract arrangement. However, these deans need a ring-fenced budget to have a lever on foundation trusts to employ this workforce and ensure high-quality training.
Vice-chancellors, too, need to understand the benefits brought from effective partnerships with the NHS and from engaging with the postgraduate training agenda. Structures and performance that match the NHS agenda require incentivisation: for example, by adding locally relevant work with industry to the criteria rewarded by panels assessing the impact of research for the funding councils.
Academic health partnerships can bring solutions to pressing public health issues, both here in the UK and globally. They represent an investment in our foreign policy. They can bring solutions to the requirements of an ageing population susceptible to multiple chronic diseases. Even stronger links between education research and service delivery can optimise the health and wealth of the nation. I look for reassurance that there is an ongoing and, indeed, increasing commitment to this agenda.
Medical Profession (Responsible Officers) Regulations 2010
Baroness Finlay of Llandaff Excerpts(14 years, 2 months ago)
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Baroness Thornton
My Lords, as the Minister quite rightly suspects, it was a combination of the report of the Merits of Statutory Instruments Committee on 7 October and my concerns that some aspects of the statutory instrument as drafted need further explanation that caused me to put down this amendment to the Motion this evening. I think it is important to say from the outset that as one of the Ministers who guided the Health and Social Care Act 2008 through your Lordships' House with my noble friend Lord Darzi, I am very pleased that this Government are showing determination to push ahead with this agenda because at the heart of this legislation are patient safety and ensuring that all clinical professionals deliver high quality, effective and safe care to their patients.
I fully appreciate that responsible officers are integral to improving care, and the development of their role seeks to raise the already high standards of the overwhelming majority of professionals, but their job is to identify and swiftly deal with the small number of staff who are not able to meet those standards. The public, professionals and the NHS have a right to be assured that licensed doctors are fit to practice.
I have absolutely no desire to delay the important matter of implementing this legislation. However, I think that it is important that the secondary legislation does the job that the original legislation intended. The report by the Merits Committee raises some important questions in this regard, as do some of the important bodies whose membership will, as it were, be on the receiving end of the instruments.
I think that the regulations do a very good job of describing the duties of the responsible officer and, indeed, the connection between responsible officers and designated bodies and medical practitioners, and this leads me to my first set of questions. Part 1 of the schedule contains a list of designated bodies that includes at least two organisations that the Government intend to abolish: strategic health authorities and primary care trusts. I join the Merits Committee in its recommendation that the House seeks clarification on how the Government's proposed changes to the NHS structure will affect the revalidation scheme in general and these regulations in particular.
Since the 2008 Act, the UK Revalidation Programme Board—hosted by the GMC, which I thank for its briefing and comment on this matter—has been rolling out the reform in phased stages, including a number of pilot exercises which aim to produce a well informed and robust system. Can the Minister tell the House how the changes that have been proposed will affect the pilots and their results? For example, the published guidance says that the responsible officers themselves will be assessed by the responsible officer in the strategic health authority, so what will happen now? How will the Government overcome this problem? I anticipate that we can expect some further orders and, if so, when and will they too be piloted? If nothing exists in the structure of the newly reformed NHS between groups of commissioning doctors at local level and the NHS Board at national level who or what will perform this function?
At the time of the original legislation, we had considerable discussion about the GMC and its role in this matter and about not conflating its particular and important role as the independent regulator for doctors in the UK or, indeed, creating conflicts of interest. At the moment, it seems to me that the only body that would appear to have a structure between the very local GP consortia and the national board is the GMC. What is the Minister’s view of this? How will revalidation work under those circumstances?
I thank the Minister for forwarding to me the letter that his honourable colleague Anne Milton sent to members of the Delegated Legislation Committee in another place. In this letter, she addressed the changes of architecture to the NHS. However, I am afraid that I did not find her explanation very comforting. She says:
“The Government’s proposed changes to the structure of the NHS set out in the White Paper ‘Equity and Excellence: Liberating the NHS’, in particular the abolition of PCTs and SHAs, will not affect the majority of organisations designated under Regulations, including NHS and independent hospitals. These organisations need to start putting the systems in place that support doctors, and provide the information that demonstrates the quality of care they provide. Without this, there is a danger that doctors will be inadequately supported for the introduction of medical revalidation in 2012. I believe that the medical leadership and stability provided by having responsible officers in place will also be important during this period of change”.
Well, quite: the two bodies that can provide that leadership are being abolished.
I turn now to concerns that have been expressed by professional organisations, which particularly led the Merits Committee to say that,
“these regulations are drawn to the special attention of the House on the grounds that they imperfectly achieve the policy objective”.
When I was a Minister, I would have regarded that as the parliamentary equivalent of being put on the naughty step and given a detention at the same time. I think that the Minister needs to give some thought to this matter and to put his responses on the record.
The British Medical Association has said that the laying of the order is “premature”. Although I am not one for delaying these matters, the Minister needs to address its concerns. The Royal College of Surgeons has expressed disappointment that many of its concerns were not addressed in the regulation. It raised the issue of potential conflicts of interest to arise from the installation of responsible officers with simultaneous corporate board responsibilities—for example, medical directors.
The RCS seems to think that such officers might be torn between trust obligations and the professional role of the responsible officer. I am sure that the Minister will be familiar with the examples that these organisations have raised. How do the Government intend to avoid the revalidation recommendations becoming the tools of managers and trust management agendas, rather than matters relating to the compliance of GMC and Royal College standards? Will the Minister confirm that it is the responsible officer’s responsibility to examine the doctor’s clinical ability and professional conduct, not his contribution to the meeting of trust budgets or targets? On this matter the regulations appear to be silent. Perhaps the Minister will expand. The RCS has expressed particular concern about the failure to incorporate whole practice appraisal in these provisions. I think that the Minister needs to give the House an explanation and reassurance about the need for the comprehensive protection to which patients are entitled.
On indemnity, will the Minister confirm how the Government will approach the issue of the potential increase in contributions for medical directors who take on the role of the responsible officer?
Finally, the GMC has expressed concern about appeals and that there is a significant omission of local appeals systems. The GMC fitness to practise processes should not be both the first and the last resort for appeal. There should be a viable appeals structure that flows up to fitness to practise. The British Medical Association says that in some organisations progress has been slow in demonstrating the capability to pull together the necessary data to actualise the new system. It says that appraisal has been patchy and disjointed in many organisations, and that that is quite aside from getting around to supporting any appeals system that may arise. I have raised several issues and I suspect that other noble Lords will seek clarification on the various other issues. I look forward to the Minister’s response.
Baroness Finlay of Llandaff
My Lords, we all know the sad history of this, through Shipman, which has led us to where we are today. I do not want to block these reforms because they will improve medicine for patients and for clinicians. But there are some questions which need to be sorted out urgently. One question is the role of the responsible officer in relation to doctors in primary care, particularly with the reorganisation.
In his opening remarks, the Minister spoke about trusts, but I would suggest that hospital practice is very much the easy end of it. The difficulty is where will doctors in primary care sit? How will the responsible officer work in relation to them? Where will academics sit and who will be the responsible officer, because there is sometimes a conflict, as has been pointed out, between academic priorities and the clinical priorities of a trust where that doctor may have an honorary contract? Even more, what about locums? What about the doctors who are constantly moving around? How will they be captured in the system? How will they be adequately and appropriately revalidated? Even with what used to be called 360 degree appraisal—that is, getting opinions from a lot of people—with locums there is a real danger that they will only spot their friends to fill out the forms because they may have had lots of contacts. Those concerns may never be sufficiently in the system to be raised before such a doctor moves on.
There is also a difficulty for those who raise problems. It may be that the doctor who is seen as the sand in the shoe of the trust, the difficult person, is raising real concerns about the way in which management is conducted, which is impeding good patient care. We know that one of the biggest problems is attitude. Often, the biggest problem encountered is not about the ins and outs of technique, because you can retrain on that quite quickly, but is about someone’s attitude. Someone who is whistleblowing, someone who works in the same organisation—I hate to use the term “whistleblowing”, because it is a sad reflection of the NHS as it is today that that term is around—and raises concerns should not in any way potentially be penalised for doing so. We would just go backwards and not forwards if that is the case.
Given that the majority of doctors are doing a really good job and are very flexible and going through changes, the system that comes in must not be too onerous. It must not be just a tick-box exercise. It has to be subtle enough to pick up real issues around performance and attitude. It has to pick up qualitative feedback, so that a bad attitude is detected, including a bad attitude towards patients.
As regards the responsible officer, I am afraid to say that I am sufficiently old-fashioned to think that I would prefer the minimum time after qualification to be a bit longer. It is not until someone has been practising for about 15 years that they really have accrued enough wisdom to be able to take on what will be a very onerous and potentially important role in relation to their colleagues. We need them to have a degree of wisdom. The appeals system is absolutely crucial if this is to work well and fairly. I hope that the Minister will give us a full reply in his response.
We also must be clear that the system will not pick up another Shipman. This is a clinical system and not a criminal justice system, so no one should be fooled into thinking that it will. Dame Janet Smith pointed out two things. First, the most important information about patient safety is doctors watching other doctors. They have to be able to raise concerns easily. Secondly, a good clinical governance system is a system in which questions can be raised at an earlier stage and more readily. So it is the whole system of the NHS with good clinical governance that will make this work. I hope no one thinks that just having responsible officers putting in appraisals will do the job because that will be a wallpapering exercise.
However, my main concern relates to primary care and to financial conflicts. In a privately managed organisation there may well be a conflict between what is actually in the patient’s best interest and what is being put forward as the protocol in that managed care programme. It may well be that the doctor is working in the patient’s best interests, but not in those of the organisation. Again, there has to be a degree of neutrality among the responsible officers. I hope that the Minister will be able to give replies to all these concerns, and like other noble Lords, I look forward to his response.
Baroness Finlay of Llandaff
Will the Minister clarify that the way in which the regulations are written is sufficiently flexible to allow a doctor to take a career break, to move into a different area or to take a break from clinical practice as it currently stands? Are they also sufficiently flexible to allow the responsible officer role not to be tied to the medical director of a trust, but if the medical director of a trust resigns from that post but is very suitable to remain the responsible officer, they can remain the responsible officer and the medical director can be someone else? Furthermore, are they sufficiently flexible to allow you to be able to get rid of a responsible officer if it turns out that they are not being wise enough?
Although this is slightly irregular, I should point out for clarification that I am not against these regulations at all—I think that they need to go through. My concern about five years is that most doctors are still in training at that stage.
Earl Howe
My Lords, the answer to the first question of the noble Baroness, about career breaks and so on, is yes, the regulations allow for that. In answer to her second question, we are not specifying that responsible officers have to be medical directors. As she knows, we are leaving it up to the organisations to decide that. Therefore, she can be reassured on her other questions.
Healthcare: Costs
Baroness Finlay of Llandaff Excerpts(14 years, 2 months ago)
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Earl Howe
My Lords, I know that this is a question to which the noble Lord and other noble Lords regularly return, and it has a superficial attraction. The problem with it, I am advised, is that patients who are informed of the cost of their treatment—some patients, at any rate—take that as a deterrent to accepting the treatment in the first place. That is something we need to avoid. Nevertheless, there is an underlying point here; there is a need to provide better information to patients about their treatment so that they can take ownership of their state of health.
Baroness Finlay of Llandaff
My Lords, what consideration are the Government giving to seven-day working in the NHS, including renegotiating Agenda for Change, to make better use of the NHS’s equipment, promote early diagnosis and decrease morbidity from complications of treatment that is not overseen by senior staff—particularly over weekends and bank holidays?
Earl Howe
My Lords, creating a seven-day service is a particular concern of mine, and the noble Baroness is quite right to raise it, particularly given her long experience in the health service. As for Agenda for Change, any alterations to existing terms and conditions, such as the unsocial hours payment or sick pay, would need to be negotiated in partnership with NHS Employers and trade unions, through the NHS Staff Council.
Health: Chronic Fatigue Syndrome
Baroness Finlay of Llandaff Excerpts(14 years, 2 months ago)
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Earl Howe
My noble friend is right to say that there is no diagnostic test for CFS/ME other than a process of elimination and watching the symptoms. It is largely on a self-reporting basis that the blood transfusion authorities will be alerted to the condition unless, of course, a patient’s GP is involved and can report his or her opinion.
Baroness Finlay of Llandaff
My Lords, do the Government intend to ask NICE to evaluate pathogen inactivation, which is already used on fresh frozen plasma for children, for blood components as well because of new and emerging infections and the increased risk of infections in donors because of the increase in international travel?
Earl Howe
My Lords, I understand why the noble Baroness asked that question. I believe that platelets cannot be stored in refrigerated conditions and are therefore, in theory, open to more infection. I am advised that SaBTO, the expert committee, looked at this and advised that no action was currently necessary.
Healthcare
Baroness Finlay of Llandaff Excerpts(14 years, 3 months ago)
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Baroness Finlay of Llandaff
My Lords, I am grateful to you for allowing me to speak briefly in the gap.
Since 1948, GPs have been independent contractors. GP practices belong to the partners, who increasingly employ salaried GPs rather than taking on new partners. In the consortium, they will need to employ advisers to manage their commissioning responsibility. Therefore, if the constituent practices are offered a good deal by a private company that also, for a fee, manages the commissioning, why not agree? That private company will then effectively own the consortium, do the managed care commissioning and keep the profits for its shareholders—effectively giving control of the NHS funds to private firms, many of which may be based abroad. Will patient need or commercial profit then determine healthcare contracts with local specialists? We live a seven-day society. Without a proper, patient-centred, 24/7 service, patients’ needs will not be properly met. I suggest that GP consortia and employment terms need a radical rethink.
Contaminated Blood (Support for Infected and Bereaved Persons) Bill [HL]
Baroness Finlay of Llandaff Excerpts(14 years, 3 months ago)
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Baroness Finlay of Llandaff
My Lords, I rise in support of the noble Lord, Lord Morris of Manchester, who must be admired for his perseverance and loyalty to a group of people who have felt severely wronged. It has been said that the civilisation of a society is reflected in the way in which it looks after its most vulnerable members. I think that the noble Lord has done a great deal to raise the level of civilisation in our society and the way in which we approach people who are vulnerable.
I declare an interest: I work for Velindre NHS Trust, which now incorporates the Welsh Blood Service. I am grateful to Geoff Poole, the director of that service, for having discussed this matter with me prior to this debate.
I take this opportunity to pay tribute to the deceased husband of my noble friend Lady Campbell of Surbiton. Graham was a delightful, charming and intelligent man, who unfortunately had contaminated factor 8. He was responsible for supporting my noble friend at the beginning of her career, which I sincerely believe has been as stellar as it has been because of the love and support that he gave her. When he died, she was completely devastated, as were many of us. In his dying, he was extremely dignified and never bitter.
The tragedy that has happened is one from which lessons must be learnt. Indeed, the noble and learned Lord, Lord Archer, says in the closing paragraph of his report:
“We must now look to the future. We cannot undo the damage done, nor turn back the clock to take a closer view of those past events and decisions”.
I take this opportunity to take a forward look. The Bill is important, but I just wonder whether it might need to take more of a prospective view, particularly where it includes lists of conditions to be considered in blood donations.
This tragedy has highlighted the problem of risk assessment. We do not live in a risk-free society and it is important that we do not fail to recognise risk when it emerges and stares us in the face. The Advisory Committee on the Safety of Blood, Tissues and Organs—SaBTO—was set up three years ago, replacing its predecessor. I ask the Minister to provide assurance that the committee will continue and remain supported, as it has important work to do. It is currently looking at the risk of new variant CJD in relation to blood, tissues and organs. The services out there are waiting to hear its conclusions as new evidence emerges.
I also take this opportunity to say that, in my view, we face an unintended consequence of previous legislation—the Human Tissue Act—which prevented our looking at routine samples from tonsillectomies and splenectomies in an ongoing way to try to find out the true incidence in the population of variant CJD. Without that information, it is harder to know the size of the risk that blood transfusion services face in taking blood from donors, as we do not have a reliable and simple clinical test to look for the presence of variant CJD. It is likely that variant CJD is transmitted in blood transfusion, but we are not sure whether the removal of white cells from blood has decreased the risk as much as the services hope. The removal of white cells should have decreased the risk hugely, but the risk is always there in the clinical scenario, where a patient faces life-threatening haemorrhages—the risk of dying from exsanguination versus the risk of transfusion. Obviously, the risk of using blood and the readiness to do so in the service varies with the clinical condition of the patient, but that balance is considered every day across Britain. We do not know whether blood should now be filtered more vigorously than has been the case because of variant CJD. SaBTO’s ongoing work will, we hope, inform that decision.
Blood services are aware of the theoretical risk, but they just do not know the best way of allocating resources to keep that risk to a minimum. We no longer use imported plasma, we do not accept paid donors and HIV is quickly identified in screening. However, the true safety of blood depends on the way in which the service screens and refers its donors. Men who have had sex with men are excluded for life from being blood donors. The decision has just been made that people with ME are deferred. There is a possibility—it is unproven—that the XMRV virus is associated with ME. The fact that these people are being excluded from being donors does not make the statement that there is a definite association, but it is part of the risk assessment process and I am glad that the risk has been taken seriously and that proportionality was applied when the question emerged. Similarly, when people have travelled abroad, donation is deferred, as things such as dengue fever are not easily detected. Much of our safety depends not on testing the blood that is donated but on the early screening out of donors who may be at risk and on being careful about the blood products that are used.
The use of blood is remarkably safe, but it would not be fair to say that it has zero risk. The major problem now comes from misidentification—either a blood sample wrongly labelled at cross-match or misidentification of the recipient, so that they are given the blood that was cross-matched with somebody else. Another problem is infection in relation to platelets, although the use of single donors for platelets has decreased that risk hugely. Platelets cannot be stored at 4 degrees centigrade; they are stored at 20 to 22 degrees centigrade, so that they still function, but that is an environment in which bacteria can multiply. Indeed, there have been recent deaths of people who, unfortunately, have had bacterial septicaemia. I hope that the Government will support new developments, such as the clotting factors that have been developed for our troops in the battlefield. They are contained in teabags and, when they are put over a bleeding wound, rapidly cause clotting. They may revolutionise our management of trauma. They are expensive and new, but they may turn out to be cost-effective in the long term.
In the balancing act, we also have to consider the costs related to self-salvage of blood. I pay credit to Dr Dafydd Thomas from Morriston Hospital, who has pioneered a lot of this work to significantly decrease exposure to pathogens. As far as factor 8 concentrates go, we hope that they are now virus free, but it should be stated that that relates to all known viruses. When I qualified, HIV did not exist; it was not known. I remember clearly the index cases that started to emerge in the USA, when people did not know what the condition was. We do not know what we will face tomorrow. Looking towards tomorrow, I think that, whatever happens, we need to be vigilant about emerging new diseases, as well as the discovery of viruses of all types which we do not currently know exist but which I am sure we will find are responsible for diseases that we are treating but do not know are infection related.
In these last moments, I turn to compensation. Whenever something has gone wrong, the longer it goes on, the worse it is for those who are bereaved and feel aggrieved. The anger and distress turn to deep, corroding bitterness as time goes on and people feel that they have not been listened to. The sad reality is that no money can replace the life of the person who has died prematurely from a cause that was not expected. In many ways, the only measure that we have in our culture is money, so we look to financial compensation. However, I hope that one of the lessons that will be taken from this whole tragic saga is that things must be dealt with quickly. To become overfocused on money is to lose sight of the deep personal distress of people before they die from the time that they know that something has gone wrong. We must address that with a change in attitude
I support the comment of the noble and learned Lord, Lord Archer, that we must get away from looking to the courts and the legal system to provide us with answers. They are the point of last resort; I would say that they are beyond the point of last resort. Things have probably gone irretrievably wrong by the time they get there.
There are many lessons to be learnt. I wish the noble Lord, Lord Morris, well with his Bill. Some tiny amendments could make it more future proof.
Health: Neurological Conditions
Baroness Finlay of Llandaff Excerpts(14 years, 3 months ago)
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Baroness Finlay of Llandaff
My Lords, I am sure that all patients with chronic neurological disease and the allied healthcare professionals who look after them would join me in thanking the noble Baroness, Lady Gardner of Parkes, and congratulating her on securing this important debate. I have to declare my interests as president of the Chartered Society of Physiotherapy, as patron of the Motor Neurone Disease Association, as patron of MS Society Cymru and as a clinician with responsibility for palliative care services in Wales, where we have recently instigated consultant and physiotherapy posts to lead on co-ordination of care for young people’s transition from paediatric to adult services.
As the Every Child Matters report, Transition—Getting it Right for Young People, points out, it is those with neuromuscular conditions who are the worst catered for. They feel as though there is an abyss when they go from children’s to adults’ services. Young adult disability teams are no more expensive than the ad hoc services that they often encounter. This debate is timely because the changes in the NHS present a real risk to the multidisciplinary specialist teams that are key to delivering high-quality care. It is cost-effective care when the teams work well, but given the new commissioning arrangements, I ask the Minister how the Government will ensure that the multidisciplinary teams have the relevant allied healthcare professionals as core members of the specialty team for these patients. These patients in any one diagnostic group with neurological conditions are not in high numbers on a GP’s list. They are not a volume problem in primary care. They have not been subject to government targets and are not at the forefront of commissioners’ minds. They are too dependent to be able to speak up for themselves, and their families are too occupied with care to have the spare time and energy to find out what they should be getting and call for it.
In the short time that I have, let me focus on a specialised area of allied healthcare professionals’ work—the management of failing respiration in patients with progressive neuromuscular disease. As respiration fails, patients do not sleep well, wake with a headache, feel muzzy, function less well and are less likely to work. That is because their lower respiratory effort during sleep means that carbon dioxide levels rise rather than being exhaled, as happens in normal deep breathing. Early non-invasive ventilation at home overnight allows the patient to have good overnight oxygenation, lowers carbon dioxide levels, and the patient wakens refreshed. This means that they can continue to function in society, and that includes working. Indeed, it is no secret that some Members of this House depend on night ventilation and contribute enormously and invaluably every day here in this Chamber.
In acute episodes of respiratory failure, the early intervention of appropriate professional help saves money and lives. Early non-invasive ventilation, or NIV, has better outcomes than intubated ventilation because it has a lower complication rate, particularly a lower infection rate. It is a technique that depends on expert physiotherapy. NIV corrects blood gases, including oxygenation, in about 70 per cent of these patients, so they do not need to go on to be intubated. Intensive care costs about £2,000 a day; 25 days in ITU costs more than the salary, including on-costs, of an allied healthcare professional for a year. It does not make sense not to have them locked in as core members of the team. It is a waste of money not to have them there.
The NICE guideline on NIV for motor neurone disease lists the core members of team as a specialist respiratory physiotherapist, a speech and language therapist and a respiratory physiologist—with others added to the team when needed. They need early contact with patients and they must be core members of the team to establish a baseline and inform patients of what lies ahead. It is often the physio who allows early recognition of symptom deterioration and the functional impacts on activities of daily living. Proactive intervention on advice on seating, limb supports and so on pays for itself over and over again. The physiotherapist can follow up on patients, provide continuity of care and free up consultant time for complex diagnoses. He or she can also allow more time at the point of interaction when people are devastated by a new diagnosis.
The churn that the noble Lord, Lord Alderdice, described occurs just as much with nurses and doctors, so competent teams are absolutely key. A proper team meets regularly, reviews patients together, teaches across the boundaries of the disciplines and develops cross-over skills. However, the psychosocial support of a proper multidisciplinary team is a major part of the specialist role. A Dutch study by van den Berg and colleagues showed that patients seen in an MDT—a multi-disciplinary team—had better aids and appliances, better swallowing support and better quality-of-life scores. The most pronounced differences between them and those with motor neurone disease seen in an ordinary neurology service were in the domains of social functioning and mental health. This was through the better implementation of supportive treatments, better nutrition and better psychosocial support. The Italians found that those seen by specialist teams had 75 per cent fewer acute hospital admissions, and, even if admitted, the length of stay was reduced by a half. The service proved cost-effective to the patients and to the community as a whole. I am quoting from a paper that they published. A Cochrane review of non-invasive ventilation in respiratory failure shows the same benefits of the multi-disciplinary team—fewer infections, better weaning off ventilation, lower mortality and shorter hospital admissions.
I am indebted to the Lane Fox unit at St Thomas’s for allowing me to access its data over the weekend, which support the cost efficacy of a highly specialised centre with a full multidisciplinary team. Such a tertiary centre can link to other units, drive up standards of care and ensure better care delivery nearer to patients’ homes. Even if highly specialised commissioning is done centrally, how will GP consortia know what to commission to ensure cost efficacy from local neurological services? It is at that level that often the really tight multidisciplinary team is not in place. The Motor Neurone Disease Association, in its “Year of Care”, provides excellent information on both the interventions and the costs, but that needs to be taken up at a local level.
Before I finish, perhaps I may turn to the more generalist services. It is the OT and the physio who will get the patient home quickly through improved functioning and appropriate support and aids to avoid pressure sores. Let us not forget that pressure sores can kill patients. It is these professionals who teach families how to support patients safely as they move. It is the physiotherapist who will spot early deterioration in neurological function. For those with stable but severe brain injury, physiotherapy and occupational therapy have led the way in helping people to get back to functioning well in spite of their disability, supported by speech and language therapists, who are in terribly short supply.
For those with a serious disease, nutrition is absolutely key to recovery. Dietetics are complex when patients need assisted feeding. No one should forget the key role of the speech and language therapist in re-establishing communication whenever speech is impaired and in ensuring effective safe swallowing, avoiding aspiration pneumonia. None of these roles can be fully undertaken by healthcare assistants or nurses. They do not have the training to give them the competencies required. However, perhaps I may give a St Bartholomew patient the last word. He wrote in a letter to his consultant at the unit:
“I really can’t overstate the benefit to me of this integrated multidisciplinary approach. It enabled me to play a major part in managing my own condition, with the minimum of time off work. It gave a richer and more thorough diagnosis than could be done by the clinicians working separately and it gave me confidence in the clinical team.
I have subsequently thought about the process from the hospital’s point of view. Some major problems were managed better than I have previously experienced, in fewer appointments and in a shorter time than using the traditional interdepartmental referral process. It has involved specialist clinicians from the outset. I could witness the energy, enthusiasm and collaboration of the clinical team. I can’t help thinking that this is much more cost-effective and economical than the old ways of doing things”.
And indeed it is.
Therefore, I urge the Government to lay out clearly the parameters of a modern service—the minimum required for a service so that the tariff is fixed appropriately. If that is not done, the allied health professionals will be the first to be skimmed off and it will be a false economy. It will rebound with complex admissions that could have been avoided, and let us not forget the cost of those admissions to the NHS.