Health: Medical Innovation

Baroness Finlay of Llandaff Excerpts

Wednesday 16th January 2013 Lords Chamber

[Baroness Finlay of Llandaff]

My Lords, I, too, congratulate the noble Lord, Lord Saatchi, for having described, in a very moving and clear speech, the reality and the horror for patients of illness and treatment, and the difficulty that many patients and their families face while in the shock of realising that life is not as they hoped it would be and has changed in an instant.

The noble Lord, Lord Saatchi, has highlighted the push and pull of the dilemma of innovation in medicine. We have a push from research councils to innovate; we have a push in academic medicine, principally in secondary care in specialist services, to innovate, to think and to instigate new trials; and we have a push from industry to come up with developments. However, we have a pull, which is a risk-averse system that is frightened of taking the decision to go with something that looks as if it might be high-risk or to go with the unknown. It is that tension between the push and pull that I think we are caught in the middle of today. Perhaps this debate is really timely, because we need to think about how we should handle that.

I was involved in some of the early trials to which the noble Lord, Lord Willis, referred, of children with leukaemia. I remember some of the children who were in the arms of the failing drugs; I remember them as if it were yesterday. I can see in my mind’s eye the room and the face of the child who then died and having to talk to those parents. However, it was through those trials, through every child taking part, that the face of childhood leukaemia has completely changed. I sincerely say, thank God that it has, because there was a terrible toll before those trials were properly instigated.

Another problem for patients, when they are faced with a disease for which there does not seem to be a conventional treatment on offer, is that in desperation they go off and try to find their own treatment and therapy. It is worth remembering that about half, or possibly more than half, of patients with malignant disease of any type seek help and treatments outside of conventional medicine, going for complementary or alternative medicine—often taking treatments for which there is no evaluation. Some years ago, it was a great difficulty for my team to cope with people who were coming in and saying that they were taking shark’s fin. The ecological disaster, the cruelty to sharks and the total lack of evidence of any efficacy made us come up with a form of words that we could use to dissuade patients from ever even thinking along those lines and discuss with them their use of alternative therapies or medicines. Some things that they pinned great hope on really had no benefit.

I also congratulate the noble Lord, Lord Saatchi, on having focused our minds on the patient in the context of themselves as a person and their whole family. He put me in mind of a patient I had at one time who was in exactly that situation. She was a young woman with a rare disease who was clearly dying. We discovered that her children had been fundraising at the school gate for a treatment that they had found on the internet. This treatment had been shipped over from America and she wanted it given to her. There was no evidence base that I could find for it, and I discussed it at length with her and her family, documenting everything—pages and pages of documentation of those conversations. She knew she was dying but she wanted to try it because she knew that her family could live afterwards if she tried it; but if she had not done so, they would not have been able to. Therefore, I undertook to take the whole responsibility on myself for administering it, equipped myself with drugs for every adverse event that might occur, and gave her one dose. There was no adverse effect but there was no benefit either, but after her death her children, who had fund-raised at the school gate, were able to cope better and were glad that she had at least tried it.

We have a system in medicine called the N of 1 trial, which is underused and should be used, particularly where we have rare conditions and genetic disorders, and where we could document and should be documenting what we do. There is a problem, though, for those who instigate such trials in getting them published. I would like to address the publication difficulty in my closing remarks—the difficulty of pooling all the little bits of information that can come from different aspects of medicine.

I think that the N of 1 trial will have an increasing place as we get further into rare genetic conditions and personalised medicine, but the NHS, with its push to embrace research as a core component, is going to have to look at a kind of buffer zone for funding the additional bits of work that need to go along with doing that properly. We also need to have good publication of negative results and we need to publish all the results, including all the adverse effects, when trials fail. Unless all of those emerge, we really will not know the full picture and what we are dealing with.

I make a plea that in this push-pull with which we are faced in medical innovation, there is a real push to have a repository for the results of some of these N of 1-type studies, and a repository for negative results and those that are currently going unpublished.

NHS: Hospital Beds

Baroness Finlay of Llandaff Excerpts

Thursday 6th December 2012 Lords Chamber

[Baroness Finlay of Llandaff]

Given the report’s figure that 6% of beds are occupied by patients who are readmitted within a week, costing almost £8 million per annum, what guidance is the department giving to clinical commissioning groups to ensure that support is available in the community so that patients discharged from hospital with multiple comorbidities and frailty do not tumble back into the admissions system?

[Earl Howe]

The noble Baroness has identified a very important issue. The causes of emergency readmissions are, of course, several. Some of them are not the fault of the provider but some are. Therefore, we have given an instruction to commissioners to build into the contracts that they have with those providing services that penalties may be applied to the provider should emergency readmissions occur which are the fault of the provider. I would be happy to write to the noble Baroness with further details.

Health: Obesity

Baroness Finlay of Llandaff Excerpts

Monday 12th November 2012 Lords Chamber

[Earl Howe]

My Lords, the role of Public Health England will undoubtedly stretch across government departments, because it should and will involve energising the efforts of not just the Department of Health and at not just national level. However, I agree that there is no single magic bullet to solve the problem of obesity. The call to action on obesity published last year set out a range of actions in which government and individuals, as well as local organisations, need to engage if we are to beat this threat to public health.

[Baroness Finlay of Llandaff]

Are the Government considering including in commissioning from health service employers a requirement to address obesity in their staff at all levels, given that the staff are often quite severely obese and act as a very poor role model for those patients whose obesity should be being addressed?

[Earl Howe]

My Lords, this is a very important point. Dame Carol Black and I chair a network within the responsibility deal in the Department of Health which draws together employers from a range of sectors to address health in the workplace. It is a tremendously important opportunity if we can engage employers to realise that it is in their direct interest to ensure that their employees enjoy good health and lead healthy lifestyles.

NHS: Death at Home

Baroness Finlay of Llandaff Excerpts

Thursday 8th November 2012 Lords Chamber

[Baroness Finlay of Llandaff]

My Lords, for this timely debate, I draw on the information that I have from the Cicely Saunders research institute, of which I am an external international adviser, and my role in chairing the palliative care strategy board in Wales. The topic of licensing doctors to prescribe lethal drugs at lethal doses is complex, and I do not think that it falls within the title of this debate, but I would simply say that from many conversations that I have had with Dutch doctors many have said that they got it the wrong way round. In Holland, one in 38 of all deaths are by euthanasia, but they still have not established specialist palliative care.

I turn to patients’ desire to die at home. About two-thirds wish to be cared for at home and go on to die at home, followed by a preference for inpatient hospice care, which runs at about 29%. That is an important, large number of people who would like to access inpatient hospices when they feel that home care is not an option for them. The wishes tend to remain constant, but not always; the reversal in trends away from home deaths happened after 2004, when the end-of-life care was instigated, and the numbers have risen to over a quarter for those with cancer who are now at home, but hardly risen at all for those dying from other diseases, only going up from 16.7% in 2004 to 18% in 2010.

For those patients accessing hospice at home services, who provide high levels of hands-on care in patients’ homes, the results are dramatically different. Of those referred to hospice at home services in Wales, 92% of St David’s Foundation patients remain at home. In Pembrokeshire, 89% of Paul Sartori Foundation patients, 32% of whom have non-cancer diseases, remain at home. In Gwynedd, those referred to the domiciliary palliative care teams have achieved 45% home death rates overall in 2010-11. So things can be very different very easily.

The conversation around care and wishes happens early and is dynamic and ongoing as the patient’s condition changes. The conversations must address fears and what is likely to happen, what the family feel that they can cope with and what they feel they cannot—and also dispel illusions around what is not likely to happen.

It is worth noting that the Cochrane review of the literature showed that when palliative care services are available the chance of dying at home is doubled. The impact of patient-focused services aimed at supporting those at the end of life is key. The most important factors that enable home death in the UK are receiving home care and intensive home care, living with relatives, having extended family support, being married, being affluent, and being younger. Interestingly, functionally less able patients seem to be able to be at home more often, probably because home care services find it easier to fit to the needs of a bed-bound patient than an ambulant one.

Socioeconomic status is inversely related to home death rates, and lower rates are also seen in the Chinese, black African and Caribbean populations, probably for multiple cultural reasons. But for NHS policy, two other factors emerge that are crucial. First, when GP visits are more frequent, as rated at three or more visits during the terminal illness, home death rates are higher. So if a guiding principle of the NHS is to aspire to put patients at the heart of everything that it does, then continuity of primary care and the ability for home visiting of the terminally ill across seven days a week will need to be addressed, because disease respects neither the clock nor the calendar.

Secondly, there is a relationship between time that relatives can take off work and their ability to provide home care support. The Canadian compassionate care benefits system warrants looking at carefully in the context of our changing NHS as it may well prove to be the most cost-effective way to support the terminally ill at home. Relatives’ satisfaction with care is greater when home care is achieved; this seems important for children who find hospital or hospice visiting difficult, although I could find no specific study of the long-term effects of hospice at home on the bereaved child’s morbidity.

There are also sound financial reasons to help patients to remain home. The cost benefit is clear: the average length of care is almost 38 days, which in a hospital bed would cost over £16,000. In Wales, as in England, we have estimated hospice at home costs to be nearer one-third of hospice in-patient costs, even when some overnight care is provided.

This debate has looked at home death rates, perhaps because they are easy to measure, but we need to know where people want to live during their final illness and ensure that services are rapidly responsive to need. Above all, staff attitudes must focus on patient need. Attitude costs nothing but the right attitude is of infinite value. If patients do not feel safe and confident in care, they will not be able to stay at home.

We must also reassess some of the insistence of services to have a hospital bed in the home. Many people want to be in their own bed and could be moved quite easily on a sliding sheet. The evidence for the ubiquitous provision of a large invasive hospital bed warrants looking at. It is not patient focused and can effectively destroy a home atmosphere. How can a relative be easily cuddled on a large hospital bed in a small cramped living room? We as healthcare professionals have to be risk aware and not risk averse and prepared to take informed risk to meet patients’ needs. One area that we have instigated in Wales has been to put “just in case” boxes into patients’ homes so that, if symptoms become difficult, fluids can easily be set up and drugs given. Investigations at home should be easy.

I will say a very brief word on the Liverpool care pathway because of the preceding speeches. This important guidance is aimed to roll out the best of hospice care into other places of care. It is not a protocol. It is not rigid. It is important that people assess whether the person is irreversibly dying, whether it is an anticipated and expected death and, absolutely crucially, whether the family know and accept that the person is dying. Is regular review in place? Does the patient need fluids for comfort? Do they need their drugs altering? The planning of regular review is crucial. It is the regular review that detects the person who is not irreversibly dying when people think again. Happily, these patients have so-called come off the pathway. It is not a one-way street. However, if it is being badly implemented at a local level, it warrants investigation. This is crucial.

I quote from a patient’s husband about hospice at home. He said:

“The support we received from St David’s Hospice Care was incredible. Their nurse arrived and co-ordinated everything when my wife came out of hospital and another nurse came overnight: I was amazed at the care and support we as a family received. My wife died at home 16 days later surrounded by her family and a Hospice Care nurse”.

We can provide good care but we have to be flexible.

National Health Service (Clinical Commissioning Groups) Regulations 2012

Baroness Finlay of Llandaff Excerpts

Tuesday 16th October 2012 Lords Chamber

[Baroness Finlay of Llandaff]

The noble Lord, Lord Hunt of Kings Heath, has done us a major service by bringing forward a full debate on these regulations. We have discussed at length the problem of secondary care representation. Indeed, the fact that there will be secondary care representation and nurse representation on clinical commissioning groups is welcome. However, the principle of integration seems to be blown apart by the way in which these regulations are written. The Royal College of General Practitioners and the Royal College of Physicians—I declare an interest as a fellow of both—and the Royal College of Paediatrics and Child Health produced a document entitled Teams without Walls about involving generalists and specialists to ensure a better, more seamless journey for patients.

In an area—and we are trying to have more localism and more local involvement in decision-making—the very clinicians on half of this pathway are now excluded from involvement in the planning and decision-making for those services yet they are the clinicians who have an in-depth knowledge and experience of the health economy, integrated working and, indeed, of the deficits in standards. That is where I wish to focus my remarks for a moment. The Francis inquiry has not yet reported but I understand that the Government have given a commitment to implement the findings when they come out. I do not understand why the Government have not left this matter completely open at the moment. If the Francis inquiry considers that there is not enough integration between secondary and primary care in decision-making, planning of services and so on, then allowing a secondary care clinician from the local area to be on the clinical commissioning group would provide the flexibility that Teams without Walls refers to.

The clinical governance of an area and its problems will be known to the local secondary care services, and they will know it across the board. There has been concern about conflicts of interest, yet a medical director in a trust represents a range of different specialties, and that has not been a problem. Clinicians have learnt how to do it. The Royal College of Physicians has produced guidance. It will produce guidance on a competitive appointment process whereby the best person for the job gets the job, and it has produced a clinical commissioning hub as a support for secondary care in its involvement in clinical commissioning groups. You could say that the basic rule of physics pertains—two negatives make a positive. It is difficult to understand why the conflict of interest that the GPs will experience, where they may be providing part of secondary care services themselves, does not matter in this, and yet it is completely prohibited to have a secondary care person who might understand how that interface between primary care and secondary care will work better at a local level. That person is excluded. It seems to work particularly against rural areas.

The last point I should like to make—apart from reminding the Government that the absolute reverse principle has been in place with the local education and training boards, where local people are involved in the very processes of commissioning the education—is about the people who will come forward. We already know that, to date, there is underrepresentation of secondary care. A clinician who is going to apply to be on a board and leave their clinical service, travel long distances and be involved elsewhere is not going to be the clinician who is completely dedicated to their local NHS service. The clinician who is dedicated to their local service and driving up care for patients is going to be the very person who will be most motivated to work with the clinical commissioning group to improve the services and the seamlessness across the piece. Excluding local clinicians seems unnecessarily to be closing down flexibility.

[Baroness Jolly]

My Lords, this is a debate about conflicts of interest and getting the right person for the job. During the passage of the Bill, my noble friend Lady Barker led the call for conflicts to be declared where a board member has connections with a provider, where GPs can provide secondary services from their practices and where there are connections with commissioning support organisations. This was deemed right and proper, and was incorporated into the Bill.

It is important that the right people sit on clinical commissioning group boards and there are clear guidelines about competence, as well as protocols about conflicts of interest. This piece of secondary legislation puts restrictions on a clinical commissioning group in the choice of its members, irrespective of their competence, in two areas. One restricts councillors from being on the board and the other restricts the clinicians to those who work for providers from whom the clinical commissioning group does not commission services.

Time restricts me from addressing both issues so my noble friend Lady Williams will address the area of clinicians. In nearly 10 years as a member of an NHS trust board, I have sat with members of all political parties and none, some of whom were councillors. Where we had conflicts, they were declared. In that time, everyone left their party allegiances at the door. They were clear that they were there to look after the interests of the NHS in their patch, and had the skills and competences required for that role. It has been like this all over the country for years. It is worth mentioning that the work of Torbay Care Trust, which has been referred to frequently, depended on both NHS non-executive directors and councillors being on the board and working together.

Clinical commissioning groups want the right person for the role. They advertise, interview and appoint. It might be that the right person is a councillor, or not. This SI restricts their choice. Councillors know the community and, furthermore, particularly in the beginning, could have given useful guidance on the workings of the council because that is an area where GPs have generally not ventured—unless of course they are a councillor and a GP. This legislation has an unintended consequence for both doctors and indeed a nurse appointed as one of the two clinicians. The LGA wrote to the then Secretary of State as soon as the SI was published. The letter was signed by Councillor David Rogers, who is chair of the LGA Community Wellbeing Board and the only councillor member of the NHS Future Forum. He wrote:

“We do not accept the case for barring councillors from the governing body who hold professional roles within the NHS, as the reason for the appointment would be their professional experience within the health service—such as the GP … The Government, if it does not listen, is in danger of creating an unintended consequence of both discouraging experienced health service personnel from getting involved in their clinical commissioning group and from discouraging them from getting involved with their local authority”.

Councillor Rogers adds:

“I know that you are fully aware that all councils have standing orders that address conflicts of interest. We expect all public bodies, including clinical commissioning groups, to have equivalent rules regarding membership of their governing bodies but the proposed statutory instrument is far too wide-reaching and disproportionate. It will not only affect GP councillors serving on the governing bodies of clinical commissioning groups but any health professional group that a clinical commissioning group decides it wants represented on the governing body”.

I also received an email from a councillor GP who had been told that he had to make his mind up. Did he want to sit on the clinical commissioning group or did he want to remain a councillor? This level of restriction was not mentioned during the passage of the Bill. He asks:

“What are the justifications for this action which makes clinical commissioning groups the most politically restricted Public Body within the UK ? Where is the evidence”—

we spent a lot of time during the passage of the Bill trying to ensure that things were evidence-based—

“that this is in the public interest? Will GPs be banned from holding political office as Councillors on the basis that they could influence Health and Well Being Boards?”.

I should like the Minister, in summing up, to reassure the House that this was indeed an unintended consequence, and that when the implementation of the Bill is reviewed in 2014, clinical commissioning group governance will indeed be part of that review. Also, for those councillors who would have wished to become engaged in the commissioning of services, will he indicate how the clinical commissioning group might still involve them, so that their skills and competences are not lost?

Drugs: Prescribed Drug Addiction

Baroness Finlay of Llandaff Excerpts

Thursday 12th July 2012 Lords Chamber

[Baroness Finlay of Llandaff]

Will the Government ensure that the recommendations from the Royal College of General Practitioners for increased training in psychiatry is implemented in workforce planning after the new Act is in place? The inappropriate initiation of prescriptions is a major problem for those becoming dependent when alternative therapies, such as cognitive behavioural therapy, or simply better social support, would have avoided the inappropriate prescription of a drug on which physical dependence then develops.

[Earl Howe]

The noble Baroness is absolutely right, and I am very pleased that both the Royal College of General Practitioners and the Royal College of Psychiatrists have been keen participants in the round table group on addiction to medicines convened by my colleague Anne Milton. The actions agreed by the group have included greater recognition of the risk and the treatment of dependence on prescription drugs within the core competencies of psychiatrists and the further development of training and guidance on this issue for GPs and other healthcare practitioners.

NHS: Liverpool Care Pathway

Baroness Finlay of Llandaff Excerpts

Wednesday 20th June 2012 Lords Chamber

[Earl Howe]

My Lords, we will continue to do so. The Liverpool care pathway has sometimes been accused of being a way of withholding treatment, including hydration and nutrition. That is not the case. It is used to prevent dying patients from having the distress of receiving treatment or tests that are not beneficial and that may in fact cause harm rather than good. The noble Lord was right that the recent national care of the dying audit of hospitals, run by Marie Curie in collaboration with the Royal College of Physicians, notes that in 94% of documented cases discussions explaining the use of the LCP were held with relatives or carers. That audit process gives clinicians an opportunity to feed in their views about how well, or not so well, the pathway is working in practice.

[Baroness Finlay of Llandaff]

My Lords, given that the Government have recognised that the Liverpool care pathway has been designed to bring the best of hospice care into other care settings, such as hospitals, nursing homes and patients’ own homes, and that it is a tool—and a tool is often only as good as the person using it—will the Government ensure that Health Education England includes in its remit comprehensive education around the appropriate care of dying patients?

[Earl Howe]

Yes, my Lords. To ensure that it is used properly, the Liverpool care pathway emphasises the importance of staff receiving appropriate training and support in its use as well as accessing relevant end of life training and education programmes. A range of activity has been undertaken to support staff education and training and end of life care by the national end of life care programme and others. That includes the development of an extensive package of e-learning, which is free to access for health and social care staff.

Older People: Health and Social Care

Baroness Finlay of Llandaff Excerpts

Monday 18th June 2012 Lords Chamber

Asked By

[Baroness Finlay of Llandaff]

To ask Her Majesty’s Government how they plan to implement the recommendations in the report Delivering Dignity.

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, the Government welcome the report from the dignity in care commission and will consider carefully all the recommendations addressed to government. We will respond to the commission in detail in due course. Many of the solutions to the issues in the report lie with the local NHS, social care providers and other key stakeholders. The Government will encourage the sharing of best practice by bringing people together and putting in place the right system incentives to enable providers to increase the quality of their services to older people.

[Baroness Finlay of Llandaff]

Following the report, Delivering Dignity, which was published today, will the Government instruct Monitor and the Care Quality Commission to require all authorised providers to seek, monitor and act on feedback from patients and their families, and will the Nursing and Care Quality Forum be widened to look at all aspects of care home staffing, root out poor care and ensure that action is taken so that respect of the individual is an “always” event in the delivery of care?

[Earl Howe]

My Lords, the NHS outcomes framework contains two domains that are highly relevant to this area. The NHS Commissioning Board will be in prime position to monitor those areas of the domains that relate to the patient experience. However, I have no doubt that the CQC will continue to do its work in maintaining essential standards of quality and safety. The Nursing and Care Quality Forum is an independent group and it is therefore for the forum itself to consider how to take forward the issues raised in the recommendation, but I understand that its chair, Sally Brearley, was already planning to consider care homes as part of the next phase of the forum’s work. She has already approached a number of individuals to strengthen the forum’s membership and add further expertise in that area.

Social Care: Legislation

Baroness Finlay of Llandaff Excerpts

Monday 11th June 2012 Lords Chamber

[Earl Howe]

My Lords, this is the first reform of social care law in more than 60 years. It is a unique opportunity to get the legal framework right. That is why we have deliberately taken time to engage fully with those who have experience and expertise in care and support. Many people in the sector have called explicitly for scrutiny on a draft Bill, so publishing a Bill in this way demonstrates our commitment to working in partnership. We remain absolutely committed to introducing legislation at the earliest opportunity in this Parliament to establish a sustainable legal framework for adult social care. The draft Bill will be the critical next step in delivering the reform agenda.

[Baroness Finlay of Llandaff]

Will the Government reassure us that in considering adult social care they will also take into account the transitional needs of children with very complex needs as they grow older and transition to adult care, because many of them are in the last phase of their illness and will die in early adulthood?

[Earl Howe]

The noble Baroness raises the key issue of transition, which will be covered in the forthcoming White Paper.

Health: Pancreatic Cancer

Baroness Finlay of Llandaff Excerpts

Monday 23rd April 2012 Grand Committee

[Baroness Finlay of Llandaff]

My Lords, I am grateful to the Committee for allowing me to speak in the gap. In this important debate, there has been much focus on research. However, results will take years to come through. Work on early diagnosis and necessary training will also take time. There are patients now with an advanced form of the disease, and there are patients whose disease will recur even when they have gone through treatments that put it in abeyance. Under the new contracting process, how will we ensure that patients with pancreatic cancer have access to anaesthetic intervention services for nerve blocks such as celiac blocks? How will we ensure that clinical nurse specialists work seven rather than five days a week, and that they work as part of multi-professional teams? Without expert medical back-up, the complexity of pancreatic cancer symptoms is difficult to deal with. How will we ensure anticipatory prescribing to reduce the complications of pancreatic cancer such as thromboembolism that sometimes kill patients before the cancer itself? Patients should also have access at all times of the day and night to drugs for pain relief and to combat vomiting.