Health: Children's Heart Services

Baroness Finlay of Llandaff Excerpts

Wednesday 12th June 2013 Lords Chamber

[Earl Howe]

My Lords, I pay tribute to the work done in Newcastle in this extremely complex area of surgery. The noble Lord knows that hospital better than anyone in this House, and I understand the disappointment felt in Newcastle about this decision. Nevertheless, I would slightly qualify the comment that he made at the beginning. Although I agree that the decision must depend on outcomes and the quality of care, it must also bear in mind the sustainability of the service into the future. While we can recognise good care when we see it now, we must be sure that the service is capable of being sustained on that level into the future.

[Baroness Finlay of Llandaff]

Is the Minister able to tell us how many vacancies currently exist among highly specialised staff in children’s heart units and what NHS England is doing to monitor vacancies? During a time of uncertainty, when staff do not know what their future will be, recruitment problems can arise, and where vacancies occur at a very senior, highly specialised level, that in itself can threaten the quality of the service and indeed jeopardise long-term sustainability.

[Earl Howe]

I do not in fact have any statistics on vacancies, although if I can acquire them I shall certainly pass them on to the noble Baroness. However, the central point that she makes is of course right, and the second recommendation made by the IRP relates to the need to have sufficient staff in place to deliver a safe service. It says that patients should receive this service,

“from teams with at least four full-time consultant congenital heart surgeons and appropriate numbers of other specialist staff to sustain a comprehensive range of interventions, round the clock care”,

and, interestingly,

“training and research”.

I think that that sends a signal that will resonate with many noble Lords in the context of debates that we have had in the past about centres of excellence in the NHS.

Medicine: Experimental Drugs

Baroness Finlay of Llandaff Excerpts

Monday 10th June 2013 Lords Chamber

[Earl Howe]

My Lords, I agree with my noble friend, and it is one of the reasons why the NHS constitution contains a pledge to inform patients of research studies in which they may be eligible to participate if there is a promising new medicine in the pipeline.

[Baroness Finlay of Llandaff]

My Lords, in light of the proposed EU directive that is being led by MEP Glenis Willmott to facilitate clinical trials and the work done by Empower: Access to Medicine, led by Les Halpin, are the Government working with the Halpin protocol, which aims to overcome the legal barriers—real or perceived—to early access to, and development of, medicine in the UK?

[Earl Howe]

My Lords, the Medicine and Healthcare Products Regulatory Agency is at the forefront of the negotiations at European level to ensure that the new clinical trials regulation, which will replace the current directive, is much more conducive to companies directing their clinical trials towards Europe, in particular, we hope, the United Kingdom. This needs to happen. The trend over the past 10 years has been in the wrong direction and we want our own market share to increase; there are already signs that it is doing so.

Care Bill [HL]

Baroness Finlay of Llandaff Excerpts

Monday 10th June 2013 Lords Chamber

[Lord Sutherland of Houndwood]

My Lords, I very much support the intention behind the amendment. It points us where we should be going. It is evident that the way in which professionals are trained deeply affects how they carry out their duties for the rest of their lives. That is a sign of good education. The noble Lord, Lord Warner, has been pointing the direction in which health and social care will and must go. It is essential to lay down the basis so that professionals accept that it is the shape of things to come.

[Baroness Finlay of Llandaff]

My Lords, for many years in medicine, there has been a move to try to ensure training in the community, but its implementation has been woeful. It has not been instigated as rapidly as people have been campaigning for over many years. I hope that the Government will look favourably on the spirit behind the amendment, although, in an odd way, the wording may be a little too restrictive. It is a very important move to ensure that, as more patients are moved out to be cared for in the community, community services can deliver what they need. With very sick people in the community, a different skill set will be needed from that which is currently available.

[Baroness Wheeler]

My Lords, I support my noble friend Lord Warner’s amendment. There will of course be further debate on integration in the wider context of the Bill, but the amendment is important because it underlines that Health Education England must have the strategic overview and understanding of the workforce requirements across the boundaries of health and social care if it is to undertake its role effectively.

Our stakeholder meetings have shown that there is considerable concern among stakeholders on that issue. They want the links between HEE and the social care sector to be more explicit. The noble Earl’s reassurances last week in that regard concerning Clause 88 were helpful, and I look forward to hearing from him further on how HEE is to work with integrated care delivery. I hope that he will concede that my noble friend’s cross-reference in his amendment to Clause 85 is necessary, because it links the HEE’s duty in Clause 88 to have regard to promoting integration to its key role of ensuring that there are sufficient skilled healthcare workers available.

The Health Education England mandate acknowledges that the future needs of the NHS, public health and care system will require a greater emphasis on community, primary and integrated health and social care. HEE is essential in that. Staff must be trained and developed in the skills that are transferable between different care settings and in working in cross-disciplinary teams in a range of different health and support settings. It must also work closely with the social care sector by developing common standards and portable qualifications across the NHS, public health and social care systems. The local LETB role, linking up with the health and well-being boards, is particularly important in that respect.

It is worth briefly mentioning two recent reports on integration, both of which, among other things, reinforce how much awareness and understanding of each other’s roles must take place for integrated services to happen and to be delivered. The shared commitment statement under the National Collaboration for Integrated Care and Support was drawn up by an impressive mix of national partner organisations, including government departments, the HEE itself, regulatory bodies, the Association of Directors of Adult Social Services, National Voices and other stakeholder groups. It pledges to help,

“local organisations work towards providing more person-centred, coordinated care for their communities”.

There is not time to go into detail, but National Voices’ A Narrative for Person-centred Coordinated (“Integrated”) Care, which sets out what integrated care and support looks like from an individual perspective, for both the cared-for and for carers, is a powerful vision for the future. It underlines how closely staff across primary, community, NHS and social care will have to work if this is to be achieved. The section of the narrative on communication describes professionals talking to each other, and patients always knowing who is co-ordinating their care, always being informed about what is going on, and having one point of contact. This in itself would be nirvana to most patients, service users and carers.

The recently published Nuffield Trust report, Evaluation of the first year of the Inner North West London Integrated Care Pilot, looks at developing new forms of care planning for people with diabetes and people over the age of 75. It underlines the importance of staff having a high level of commitment to the pilot and to the care planning process in particular. Initial results show that work on care planning and multidisciplinary groups resulted in improved collaboration across the different parts of the local health and social care system.

On public health, the HEE mandate itself states:

“The health of people in England will only improve in line with other comparable developed countries when the entire NHS, public health and social care workforce genuinely understands how their services together can improve the public’s health”.

Does the Minister accept that the HEE mandate supports the case for the Bill to include an explicit reference on the overall strategic context?

HEE’s role is to provide national leadership for workforce training, planning and development, ensuring that we have skilled, committed staff in the right place, in the right specialities and numbers. We need to meet these challenges of the future and of the changing face of healthcare provision. How to ensure an integrated approach to education and training across the NHS, public health and social care is a very strategic issue. I hope that the Minister will reassure the House on this by responding positively to the amendment.

Care Bill [HL]

Baroness Finlay of Llandaff Excerpts

Tuesday 4th June 2013 Lords Chamber

[Lord Warner]

My Lords, I support these amendments. I will pick up the point made by my noble friend Lord Hunt about managers. The public sector needs all the quality management it can get and many of its problems rest on the fact that we do not have a cadre of managers to take many of our public services through the difficult years ahead. The NHS is no exception.

For too long—and my own party has been guilty of it in the past—we have dismissed managers as men, and indeed women, in grey suits who are dispensable. We have to give some strong messages to HEE that if the NHS is to develop and evolve and cope with the problems ahead, we need a strong cadre of managers and we have to develop them over time. It is not too early to start now because we have a real problem not just in staffing chief executives now but in staffing the next cadre of chief executives and the middle management and development programmes for that. The Government would do well to give some strong messages to HEE and possibly even consider strengthening the legislation on this issue because it would be a missed opportunity if we do not strengthen that body of people to help us run the NHS in the coming decades.

[Baroness Finlay of Llandaff]

My Lords, I will briefly add my support, particularly to the amendment in the names of the noble Lords, Lord Turnberg and Lord Patel. I will draw the House’s attention to the wording, that it is,

“expertise in medical education and training”

that is being asked for, not just medical education, and that the expertise in research is not tied to medicine.

I understand the arguments that HEE must not be too tied or have a board that is too rigid, but if it is to meet the enormous challenges that it faces—and it has come from many, many discussions—to be able to have questions asked at board level about education and training will be essential if we are to have a workforce that can adapt rapidly as new technologies and new ways of providing care come along. It will need to have people with expertise and understanding of the most efficient and effective ways to upskill the workforce in particular areas, because there are enormous unknown challenges ahead.

National Health Service (Procurement, Patient Choice and Competition) (No. 2) Regulations 2013

Baroness Finlay of Llandaff Excerpts

Wednesday 24th April 2013 Lords Chamber

Tonight is another opportunity for my noble friend, as he has done so often in the past, to give some comfort to those who are anxious about these proposals. I admire the diligence of the noble Lord, Lord Hunt, who so often scrutinises these regulations. This needs to happen, but I share some of the views expressed by my noble friend Lady Williams that there has been so much misinformation. These regulations have caused so much angst and worry, which has been a real pity and unnecessary. However, there is room for clarity and I think this is on its way. Some further guidance, too, is necessary to enable a proper understanding of the regulations. Perhaps my noble friend would comment on that.

[Baroness Finlay of Llandaff]

My Lords, the hour is late and many of us are extremely keen to hear from the Minister. He took a brave decision in withdrawing the original set of regulations, and now we have these laid before us. Many people have posed questions and I hope that he will address them all head-on in his summing up. The lead question that has been asked tonight is why there is a such disparity between the centre here and how it is interpreted out there. Therefore, what will the Government do to make sure that there is no panic about challenges, that this does not become a lawyers’ charter and that integration works in the best interests of patients? Clause 2 suggests that it should take precedence over Clause 5 and that integration is key, because it will secure the best services for patients today and those of tomorrow. We have education, research and training in the Act and these also need to be secured for long-term stability. I suggest that we now need to hear from the Minister.

[Baroness Jolly]

My Lords—

Health: Cardiology

Baroness Finlay of Llandaff Excerpts

Wednesday 6th March 2013 Lords Chamber

[Earl Howe]

My Lords, the noble Lord makes a very good point. Again, as the CVD outcomes strategy sets out, basic life-support skills could be more widely taught as part of volunteering programmes; for example, in schools and the workplace. I am aware that bystander CPR doubles survival rates yet is attempted in only 20% to 30% of cases. There is scope for all emergency service personnel to be trained in CPR, and for basic life-support skills to be taught more widely.

[Baroness Finlay of Llandaff]

Are departmental advisers working with the new chief coroner, whose appointment has been widely welcomed, to ensure that there are minimum standards at post-mortem, so that when a young person has had a sudden cardiac death the risk to other family members can be appropriately identified? It is important that specimens from the heart of a deceased young person are not lost because the post-mortem has not been done to a high enough standard.

[Earl Howe]

The noble Baroness makes a very important point. My department supported the formation of the UK Cardiac Pathology Network in 2006 to provide local coroners with an expert cardiac pathology service and to promote best pathological practice in sudden death cases. A national database on sudden arrhythmic death was launched in November 2008, allowing pathologists to record information on cases referred to them. In the longer term this could be very helpful in building a deeper understanding of the problem.

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.