Care Bill [HL]

Lord Patel Excerpts

Tuesday 21st May 2013 Lords Chamber

[Lord Patel]

My Lords, the Government have to be commended on bringing forward this Bill to reform the current system of social care and thus bringing in a fairer system. Many noble Lords have commented on the financial issues, saying that adequate finances will be required to make sure that the ambitions of the Bill are delivered. Noble Lords have also commented on another important issue, that of the eligibility criteria that are to be used. If these two things are not met appropriately, the duties being placed on local authorities in Clause 1—promoting well-being, preventing deterioration and reducing need—will be difficult to meet. It will also mean that more people end up in A&E, in primary care and as in-patients.

I am concerned about two other issues. As yet, the Government have not accepted the need to provide free care and support for cancer patients at the end of life. I remain encouraged by the comment made by the noble Earl when we considered this issue in the debate on the gracious Speech. He said that there was “much merit” in the idea. I hope that he will be able to convert the thought that the proposal has much merit into an amendment that the Government will bring forward.

A survey by Macmillan Cancer Support has shown that 91% of cancer patients at the end of life wish to die at home or in surroundings familiar to them. The barrier to this is the lack of care and support they need along with complicated, lengthy and stressful processes to access funding for care. Financial means testing when patients are dying does not seem to be compassionate or caring. The argument for providing free social care at the end of life is strong. It will deliver the Government’s vision of integration and choice. Research by the Nuffield Trust shows that a saving of some £52 million a year could be made through reduced hospital admissions. I hope sincerely that the Government will amend the legislation to do this, or accept an amendment that I will bring forward.

There is also the issue of the support that the carers of cancer patients get or, rather, that they do not get. Almost 1 million cancer carers give their valuable time to this, saving services probably in the region of £12 billion a year, yet half of them receive no support at all and the other half very little. This is partly because most of them do not see themselves as carers and are unaware of their rights; fewer than 5% get any assessment at all. What would help is if a similar duty as the Bill puts on local authorities is placed on the NHS to work with local authorities to identify the support needs of carers who are themselves supporting cancer patients. Cancer carers will then receive the support they deserve.

The other areas of concern to me relate to Clauses 55 to 63, also referred to by the noble Lord, Lord Rix, and I associate myself with his comments. I want particularly to make a point about the support and care of children and young adults during the transition period. More than 40,000 children and young people aged between one and 19 in England have long-term conditions which, for the most part, will end their lives or for which they will require palliative care. They may have complex health conditions and severe disabilities, and for the most part they are looked after by parent carers. This is not end-of-life care, but care that brings some comfort, respite, the relief of suffering, and a little bit of quality of life. Evidence shows that while they are children and in their early teens, these young people receive support from children’s services. In their late teens they begin to receive services from adult services, but that support is often reduced, fragmented and disjointed. Parents describe this transition of care as “standing on a cliff, about to fall into a black hole”. It is not difficult to imagine the stress and anxiety it must cause to young people and their carers.

The proposals in the Bill are a step forward, but in my view they need to go further. A consortium of charities which has grouped together under the charity, Together for Short Lives, feels that this provision needs to be strengthened. The Bill should make it clear that when a young person reaches the age of 14, local authorities should initiate transition planning with the young person, their family and the relevant agencies, so that by the time they reach the age of 16 a five-year rolling programme for their support and care is in place. I hope that the Government will be sympathetic to this and that the Minister, if he is able to do so, would be willing to meet with representatives from Together for Short Lives and myself.

Part 2 of the Bill relates to performance rating. I support in principle the idea of introducing a system that assures quality of delivery of health and social care. Suffice it to say at this stage that whatever the final system that is introduced is like, it has to be credible and have the confidence of both patients and health professionals. If it is going to be based on three domains of quality—clinical effectiveness, patient experience and patient safety—the dataset needed to achieve this in an equitable and fair way is available for some areas, but not all of them. I hope that the Government will see the introduction of assessment as formative and embedded over a period of time, evolutionary in helping to develop appropriate datasets leading to improved services, rather than a one-off assessment that identifies only failures and shortcomings. I am very familiar with a system based on standards that encompass the three quality domains of clinical effectiveness, safety and patient experience, but using a different process that works. I know of no system within our national healthcare that is similar to the proposals, although of course there are large healthcare providers which are using a similar methodology. I look forward to the debate on this subject and hope to contribute to it.

Perhaps I may comment briefly on the other parts of the Bill, starting with Health Education England. In my view, the Government have brought in provisions that we agreed in principle in the Health and Social Care Bill. The Government have to be commended on doing this and I thank the noble Earl. I am also encouraged by the appointment of Professor Wendy Reid as the medical director. Health Education England will have someone with huge experience and skills in health education. My only comment relates to the local education and training boards. Why is there not a duty placed on them to promote research and research training, a point also mentioned by the noble Lord, Lord Willis of Knaresborough?

As for legislation related to the Health Research Authority, its current role is small and we will want to see how it evolves. I recognise the comments made by the noble Lord, Lord Willis, about too many regulators in the area of health research. I hope that the Government will look at this, while the inquiry into regenerative medicine may also give rise to some comments. I think that the Government are right not to put a duty on the Health Research Authority to require the publication of the results of research. It is much better that the authority should work with others to encourage the publication of research and that it develops over time an appropriate methodology. The mandatory publication of research by the authority would have been the wrong thing to do. It does not work; it has been tried in other countries, including the United States.

As for the Human Fertilisation and Embryology Authority, the original Government thinking was right, but now that they have changed their mind and have decided to keep the authority, I hope that it concentrates on its key role of improving services related to infertility.

In conclusion, on the whole I am supportive of this Bill and hope that the Government will be sympathetic to amending some of the areas I have alluded to in order to help improve the lives of those most in need of care and support.

Health: Cancer

Lord Patel Excerpts

Monday 20th May 2013 Lords Chamber

[Earl Howe]

My Lords, the noble Lord makes a good point. When recording the cause of death on a medical certificate of cause of death, doctors are required to start with the immediate, direct cause of death and then go back through the sequence of events or conditions that led to death until they reach the one that started the fatal sequence. This initiating condition will usually be selected as the underlying cause of death according to the International Classification of Diseases coding. However, that does not mean that someone with a primary cause of death of cancer will not have pneumonia, or whatever it happens to be, recorded somewhere on the death certificate.

[Lord Patel]

My Lords, does the Minister agree that as we progress with the current research into the molecular tagging of drugs that have the same molecular make-up as the cancer itself and nanomedicine we will be better able to target cancer tissue while leaving normal tissue alone? That will save lives lost to the complications related to treatment.

[Earl Howe]

My Lords, I agree, and I am confident that over the years ahead we will see a much greater emphasis on stratified medicine, particularly if we can relate treatments to genomic data.

NHS: ECMO Machines

Lord Patel Excerpts

Monday 22nd April 2013 Lords Chamber

[Earl Howe]

My Lords, there is, I understand, no intervention capable of restoring heart function some hours after a heart attack. The only exception is not applicable to heart attacks but to people who have had circulatory arrest due to hypothermia—for example, people who have been buried in avalanches or immersed in very cold water. That area is currently being researched. It is only in a very limited number of circumstances that ECMO support can improve a patient’s chances of survival following cardiac arrest—usually in patients who suffer in-hospital cardiac arrest following surgery.

[Lord Patel]

My Lords, as the noble Earl indicated in his opening remarks, a typical facility required in the provision of a service such as ECMO for adults who suffer acute myocardial infarction would include a perfusionist, intensive care facilities, an intervention cardiologist, a cardiologist expert in cardiac failure, a cardiac surgeon, together with specialist nurses. Preliminary results of studies suggest that the survival rate might be less than 30%. Does the noble Earl agree that more research is needed before such a treatment can be made available routinely?

[Earl Howe]

I fully agree. The noble Lord is quite right. ECMO cannot be provided by just any ICU team. It is a highly specialised treatment with significant potential for serious complications, and considerable expertise is therefore required, including having a multidisciplinary team of the kind that he outlined. In general, capacity has much more to do with having suitably trained staff than with having the equipment itself.

Mid Staffordshire Foundation Trust Inquiry

Lord Patel Excerpts

Tuesday 26th March 2013 Lords Chamber

[Earl Howe]

My Lords, it was a signal feature of the Francis report that he consciously avoided pointing the finger at individuals. The chief executive of the NHS did not have the finger of blame pointed at him. The House may be interested to know that I regard Sir David Nicholson as a truly outstanding public servant who has done an enormous amount of good for the NHS since becoming chief executive.

The benefit of hindsight is wonderful but we must remember that in the years in which these dreadful events took place the National Health Service was held to account by reference to two main indicators: access to care and waiting times, and finance. Above all, it was the arrival of the noble Lord, Lord Darzi, as a Minister and the Secretaries of State whom he served that saw the transformation of the NHS from an organisation that was concerned just about numbers into one that really appreciated that quality matters. Therefore, to accuse those with positions of responsibility with regard to Mid Staffs of overlooking the fact that quality was poor is to place a wholly unfair retrospective expectation on them.

[Lord Patel]

My Lords, a great deal of importance and emphasis is being placed on introducing zero harm with regard to patient safety. I am delighted that the Government have asked Don Berwick to advise them how to do this. Do the Government intend to have zero harm in the NHS as a concept or as a requirement? If it is the latter, what legal framework will make that happen?

[Earl Howe]

It is much more a question of culture than anything else. However, the noble Lord will be aware that Robert Francis recommended that we look at the concept of fundamental standards below which care should never fall. We are determined to do that. Defining a fundamental standard is something for wide discussion. However, we take this recommendation very seriously. Robert Francis was clear that if individuals or an organisation were found guilty of breaching fundamental standards, serious consequences should ensue.

On a more general level, it is impossible to expect human beings never to make a mistake or never to fall down on the job. The point here is to create an attitude of mind in all those who work for and with the NHS that puts the patient’s well-being at the centre of their daily lives and thinking. That is where we want to be.

Health: Cancer Drugs Fund

Lord Patel Excerpts

Wednesday 13th March 2013 Lords Chamber

[Earl Howe]

The noble Baroness raises another important point about orphan drugs and indeed ultra-orphan drugs as they are termed—drugs which are efficacious and helpful for patients with very rare conditions. It is likely that we will need to put special arrangements in place for the pricing of those drugs. Overall, however, I agree with the noble Baroness that the cancer drugs fund has been immensely helpful. So far, since October 2010, the funding has helped more than 28,000 patients in England to access the cancer drugs that their clinicians recommended, which they would not have done otherwise.

[Lord Patel]

Will the Minister confirm that whatever new arrangements are put in place will be on the same principle and basis as the current cancer drugs fund?

[Earl Howe]

I cannot confirm that we will replicate the current cancer drugs fund in its entirety—no decision has been taken—but we are clear about the principle behind the fund. The reason for creating it in the first place was to help the thousands of cancer patients and clinicians who were having difficulty accessing some cancer drugs mainly as a result of funding constraints. I assure the noble Lord that we will continue to retain that thought very much at the front of our minds.

NHS: Mid Staffordshire NHS Foundation Trust

Lord Patel Excerpts

Monday 11th March 2013 Lords Chamber

Asked By

[Lord Patel]

To ask Her Majesty’s Government what plans they have to implement the recommendations of the Francis report into the Mid-Staffordshire Hospitals NHS Foundation Trust.

[Lord Patel]

My Lords, even though the hour is late, the weather is inclement and the speaking time allocated to each noble Lord is short, I am grateful to all noble Lords who are to take part in this debate. I recognise that, although the Minister will have to reply to the debate on behalf of the Government and that the Government will eventually respond to the Francis report, the report spans several previous years. I hope the Minister can tell us when the Government will produce their full response and what form it will take. Will they make a financial assessment of the implementation of the recommendations?

Compassion, care and co-operation are the magic of the NHS; so said the leader of the Opposition at, I am led to believe, a Labour Party conference. The report by Robert Francis on Mid Staffs Hospital suggests that that magic is gone, not only from Mid Staffs, but, judging by the daily reports from more and more hospitals of poor quality care, from other hospitals too. The culture that brought about the disaster at Mid Staffs may well be more widespread. At the same time, there are hospitals that provide excellent, high quality, compassionate care, and we must not forget that.

None the less, Francis has to be right when he says that a cultural change is required. We need a culture that cares for patients and puts the quality of patient care and safety first, with a shift from compliance to targets and from financial probity to patient care. The words “patient safety” appear on virtually every page of the report. That such a degree of harm and suffering was inflicted on patients and that doctors and nurses were part of the culture is hard to comprehend. As a doctor who worked in the NHS only, I recognise the words of another clinician, the noble Lord, Lord Darzi, who wrote in the Times on 4 March that for doctors, nurses and other clinical professions, professional pride defines who they are. That clinicians had become part of a culture of bullying, secrecy and gagging is difficult to fathom. To change this culture, the Francis report, which extends to 1,800 pages, makes 290 recommendations covering the spectrum of the regulation of healthcare, including patient and public involvement and complaints handling. If the recommendations are implemented in full, what effect does the Minister think it will have on the reforms in the Health and Social Care Act?

One of the key recommendations of the report, which the Government rejected from the outset, is to merge the financial regulator Monitor and the quality regulator CQC, both of which failed in Mid Staffs. Experience has been that the two organisations have not been able to work together in a co-operative way, so why have the Government been so quick to reject the Francis recommendation? Francis expects that all organisations, including the Department of Health, should report annually on progress towards implementing his recommendations. Will the Minister say who in the Department of Health will have the responsibility of making sure that that happens? I cannot help but feel that patients and the public will expect the Government to take the lead.

In the Statement that followed publication of the report the Government announced the establishment of a post of chief inspector of hospitals. The CQC in its response added a chief inspector of social care. Does this fundamentally change the function, nature and the management of the CQC? What is the role of its board and chief executive vis-à-vis the chief inspector and his army of inspectors?

The Secretary of State is inviting other regulators to inform him how they will make the processes and system of accountability more stringent. From the many briefs your Lordships have received in advance of today’s debate, all the regulators and the so-called quasi-regulators see themselves as having a key role in making sure that high-quality patient care is delivered and is safe. They all also suggest that they may carry this out by inspections. If they and their managers now see the Francis report and its recommendations as the new targets, then they miss the point. I hope the Government do not. No amount of inspections by expert inspectors and regulators on their own will provide the safeguards needed, nor improve patient care. The culture change that is required will allow well trained health professionals to provide the patient care that the majority of them are capable of providing and let others provide the support that enables them to do so. Of course their performance should be monitored and their shortcomings dealt with.

On a personal note, last week I came across brilliant, compassionate, world-class quality care when I had surgery to restore my sight. Now I can see noble Lords in their full glory—some of it is a pleasant sight. All the professionals and non-professionals I came across in that hospital—I do not mind naming it; it was Moorfields Eye Hospital—were world class and brilliant. The culture that was exposed at Mid Staffs does not exist everywhere else and the response therefore must be proportionate. I did not see any of the Mid Staffs culture in that hospital.

I would be concerned if all the regulators, commissioners and others—I counted 21 organisations whose briefs I read as a response to the Francis report—now wish to monitor and inspect hospitals. Bureaucrats only increase bureaucracy. Does the Minister agree that a clear direction is required from the top as to the role of each organisation in the implementation of the recommendations of the Francis report?

I come now to the patient safety recommendations in the report. Two words appear frequently. Francis felt failures at Mid Staffs were a result of systems failures. Others have agreed, if only to absolve themselves or their organisations from blame. Other industries such as the airline, nuclear, transport and offshore industries are familiar with the concept of systems failures. They also know that the same system is operating throughout the industry and if it fails in one place it is likely to fail elsewhere too. For example, the 787 Dreamliner was grounded because two planes showed faults. The next step in any systems failure is to carry out root cause analysis, implement the learning and make changes to make the system safer. If the Francis report is a root cause analysis of a systems failure, then a systems change is required.

Francis also recommended establishing a national system of reporting and learning from patient safety incidents. Who will be responsible for making sure that this is done? The Government are also asking Sir Don Berwick to advise them on the implementation of a strategy of no harm in the NHS. Sir Don Berwick, previously administrator of US Medicare and Medicaid, is a friend, and we worked together previously. Can the Minister confirm or say otherwise that the advice Sir Don Berwick gives will be published in full and will be implemented?

The Francis recommendations are far reaching with very wide implications. Unless the Government take a lead and give clear direction on the way forward, we run the risk of chaos reigning. I look forward to the Government’s studied and considered response in due course and hope that then we will have a longer debate at an earlier time.

Health: Cardiology

Lord Patel Excerpts

Wednesday 6th March 2013 Lords Chamber

[Lord Hunt of Kings Heath]

My Lords—

[Lord Patel]

My Lords, will the Minister explain a little bit more about the proposed public consultation on screening? The evidence for the screening of families where a cardiac death has occurred, particularly in a young person—which is linked to a gene—is conclusive, so what is the public consultation about?

[Earl Howe]

The public consultation is reviewing the policy position on screening for hypertrophic cardiomyopathy, but the noble Lord is absolutely right that better identification of families who are at high risk of inherited cardiac conditions is vital. That is stressed in the cardiovascular strategy.

Medical Research: International Rare Diseases Research Consortium

Lord Patel Excerpts

Thursday 28th February 2013 Lords Chamber

[Earl Howe]

I am grateful to my noble friend and I extend my sympathies to his wife. Unfortunately, with many very rare diseases, it often takes a great deal of time for a fully fledged diagnosis to be arrived at. I welcome the suggestion put forward by Rare Disease UK for co-ordinators and we will certainly look at that idea positively. I can tell him that the imperative to look at rare developmental disorders in children is the focus of a project that the NIHR and the Wellcome Trust are funding through the Sanger Institute in Cambridge. Scientists are analysing the genomes of 12,000 children with developmental disorders who could not be diagnosed following routine genetic evaluation. We are hopeful that that will produce some interesting results.

[Lord Patel]

My Lords, I declare an interest in that my university is involved in finding treatments for some rare diseases. An international collaboration has set the ambitious goal of finding treatments for 200 rare diseases by 2020. One of the important research areas has already been mentioned, which is the sequencing of the genome of patients with rare diseases. The other area, which alludes to the question asked by the noble Lord about the care of those patients, is that of finding new diagnostics so that we can diagnose those diseases early. What are we doing through the NIHR or through biomedical research centres to encourage the development of new diagnostics for those diseases?

Health: Medical Innovation

Lord Patel Excerpts

Wednesday 16th January 2013 Lords Chamber

[Lord Patel]

My Lords, I thank the noble Lord, Lord Saatchi, for initiating this debate and for presenting it so movingly. This ought to be the start of such debates. It ought not to be the last debate we have on this subject. I hope he will remain committed to leading us in future debates.

Some of the treatments the noble Lord described, particularly for some cancers, are medieval and this continues to be the situation for some cancers. Treatment for pancreatic cancer, to which the noble Baroness referred and of which both my mother and my mother-in-law died, remains the same. However, there is hope. Some novel and innovative treatments are now being tried out, such as molecular tagging of drugs to get at cancers that are not amenable to conventional treatment. There is also nanomedicine for targeting tumours that are not responsive to current treatments. There are other technologies that I will come to which could be used to target tumours that are not receptive to radiotherapy.

We should also be slightly more optimistic in this country about where our science is today compared with 10 years ago. For instance, we have had 12 Nobel Prize winners in medicine and physiology since 2001. We have to go back to 1998 for the previous one. Not only that, we have Nobel Prize winners in allied disciplines, such as Sir Venkatraman Ramakrishnan who won the chemistry prize in 2009 for his isolation of the structure of life science-related diseases.

We now have a commitment from the Government to investing in science and having strategies in life sciences and other fields. We should give credit for that. We hope that innovations will come but we must also ensure that regulation is proportionate and is not bureaucratic. We must always keep an eye on that.

There is also the question of investment in translational medicine. One example is in the field not of drug therapy but in cell therapy where big pharma will not invest and small countries do not have the money to do early translational research. There are many examples. One is the use of embryonic stem cells as a therapy for age-related macular degeneration. Currently, the first-phase translation of that is being funded through research councils and charities. The Government should be funding early-phase translation. What plans do the Government have to help with this?

I come now to technological advances and I use the example of focused radiotherapy which is often referred to as “cyberknife”. Of course it is not a knife: it is focused radiotherapy. You cannot use conventional radiotherapy for targeting tumours because you will do more harm to normal cells. Currently, to make that available to a patient who is not amenable to conventional treatment, the doctor will have to ask for finances from commissioners or PCTs. They do not have the expertise to know whether that is indicated for that patient or not, and they may or may not fund it. The Government should be commended for accepting in the Health and Social Care Act that all NHS organisations must have an awareness of research, but it is difficult to find money to fund an expensive, one-off treatment. However, that is sometimes the only thing that is available to the patient. We should support such technologies and make sure that whenever we find that they are not supported, we do something about supporting them. Will the Minister confirm that he will expect commissioners to look at such treatments and innovations in a more favourable way and provide the funding that individual patients require? These treatments are expensive.

I again thank the noble Lord, Lord Saatchi, for initiating this debate. We should debate some of these issues at length at the Second Reading of his Bill and I wish him luck with that.

Diabetes

Lord Patel Excerpts

Thursday 10th January 2013 Lords Chamber

[Earl Howe]

My Lords, there is no single magic bullet that will solve this problem, but undoubtedly better monitoring in general practice is one answer; the QOF incentivises that. The NHS outcomes framework will also incentivise clinical commissioning groups to ensure that those with long-term conditions—particularly diabetes—are properly looked after. The benefits of multidisciplinary teams are now proven. The evidence is there and, if we can shine a spotlight on the statistics—and there is, as the noble Lord knows, a wide variation in success rates across the country—that will be the key to driving better performance throughout the health service.

[Lord Patel]

My Lords, does the Minister agree that part of the problem is that while the NICE guidelines, if implemented throughout the country, would reduce the variation rate in amputations, particularly of lower limb extremities, it is not mandatory to implement those guidelines? He may be aware that several nations, including Scotland, have recently reported a reduction of 30% in the amputation rate, following strict protocols in diabetic management.

[Earl Howe]

My Lords, there are centres of excellence throughout the United Kingdom, from which I am sure the health service as a whole can learn. The noble Lord is absolutely right. He mentions the NICE guidelines; he is right that they are not mandatory, but they do point to best practice. By highlighting the data, we can ensure that commissioners and practitioners ask themselves the right questions about whether best practice is being followed.