Diagram shows people’s preferences for choice at end of life – consultation call

NCPC (the National Council for Palliative Care) is doing a consultation for the government on having choices in end-of-life care – you have to reply soon (by 30th September) to contribute. The website has a rather nice diagram showing some of the things that people want choice about when approaching the end of life.

Link to the NCPC website saying how you can participate.

Public policy neglects funeral costs for people living in poverty – international study

This interesting article argues that public policy neglects funeral costs as an issue for people living in poverty; it reports a pilot international study.

From the Cradle to the Grave: Funeral Welfare from an International Perspective Valentine 2013 Social Policy & Administration Wiley Online Library.

Mesothelioma changes may be for insurers’ benefit, not victims; more research needed

Palliative care social workers often have to help people with mesothelioma, the lung disease which usually leads to an unpleasant death, caused by exposure, sometimes unwitting and often decades before the occurrence of the disease, to asbestos. This is an industrial disease and employers must pay compensation, but it is hard to prove where people were exposed to asbestos, and many employers have disappeared in the interim. Provision is often made by insurers, and the compensation payments have been valued by people affected, and their families after their deaths. The insurance industry has been trying to limit its liabilities (which are extensive and ongoing) and the government has been negotiating with them over this. This brief comment from the Kennedy’s Liability Briefs (Kennedy’s are a law firm that specialise in various forms of legal liability) indicates a recent move, and gives you a clue to what’s involved:

The Mesothelioma Act came into force on 1 September 2014, which creates a payment scheme, funded by the insurance industry, in order to help those victims who currently have no redress to compensation. Meanwhile, the Justice Committee has criticised the Government for lack of transparency about the ‘agreement’ drawn up between the Association of British Insurers (ABI) and the Government in 2012 in which the ABI agreed to pay for the payment scheme. A response by the Government to the call for a fresh review is expected by the end of September.

Link to the Kennedy’s Liability Brief

You might find it useful to look at the legislation:

Link to the Legislation

and look at the Parliamentary debates.

Link to the Parliamentary debates

This was routine government business, so it started out in the House of Lords. You can see the explanation of the Act given by Lord Freud in the House of Lords at the second reading, and this gives you a good idea of what’s involved:

Link to the second reading House of Lords debate

However, the Brief suggests that not all is hunky-dory. The Justice Parliamentary Select Committee published a series of reports about whether people claiming compensation could reclaim legal costs; the government, in its aim to cut legal aid costs has been arguing not, but virtually everyone else argues for it. The government is accused of not being totally transparent in its dealings with the insurance industry, giving rise to the suspicion that it has been keener to help the insurers than the victims of the disease (while also keeping its costs down). the report says, at Para 29:

We are concerned that the Government has not been transparent or open, either with us or with other interested parties, about the fact that its overall policy in relation to mesothelioma has been shaped in accordance with an “agreement”, however informal and elastic, which it had reached with employers’ liability insurers. It is hard to see how a balanced and informed public debate can take place when a prior agreement has been reached between two of the principal parties to that debate, and that agreement is not known to others participating in the debate, including victims.

Link to the Justice Committee 3rd Report on the scheme

Bearing this in mind, it might be good to keep our eyes open for how the Act in practice will work on behalf of victims and families, and encourage some of the interested MPsto tkae up things which do not seem to be going well.

There are lots of other issues, which emerged as the Act progressed through Parliament. For example, MPs were concerned that not enough research was being done to ensure that British NHS patients got the best treatments available elsewhere. You can see this debate in the House of Commons Report stage:

Link to the Third Reading debate.

Compensation when complex care goes wrong: we need public service not medical negligence

An interesting comment from a lawyer about whether a ‘no fault’ basis for claims against the NHS would be better than the present system where people who are dissatisfied with their care on the NHS and seek compensation have to go to court. She’s writing on a blog about clinical negligence. Her view is that because you have to have expert evidence, it discourages people trying it on, and leads to a fair outcome. Many people also argue that the court system has a formula for compensation which is more realistic than the amount that would normally be arrived at by a bureaucratic system, in which the government would inevitably have a hand.

The main argument for a no fault system is that if you need compensation for something that has gone wrong, you have needs that should be met, and meeting those needs should not depend on whether you can prove someone was at fault. Often things go wrong and nobody is at fault, but your care needs still have to be met. And it means you have to go into battle, in public, and the medical profession has it well-sorted to defend themselves at all costs. Also, it often means that people who can prove a fault and get compensation get more choice and better, more luxurious care than someone with just the same needs you cannot prove a fault. Why should the wronged get better care than the unlucky?

One view of the interests of public policy, which this comment alludes to, is that having an adversarial system encourages the NHS (which after all is a public service) to conceal problems rather than seek to get it right for you and, by improving their services, for later patients too. Also, of course, it sets people against their doctors and service providers, when they will continue to need care later in their lives, but might often be seen as troublemakers. And where it is a public service, like social care services still are, a complaints mechanism and political responsibility should still play a part. The problem with just accepting a complaints mechanism and no fault compensation is that it seems to be impossible to get public services to look at their what they’ve done and acknowledge it when they’ve got it wrong. That’s probably human nature.

Added to the natural human tendency to be defensive if you are in the wrong, the market system of care, with bits of the service increasingly privatised, make it increasingly hard to tell what you should hold a public service responsible for. In the Guardian today, film-makers are complaining about the BBC ‘commissioners’ interfering in their creative processes to pursue the channel ‘demographic’, by which I mean some marketing policy that they’ve drawn up to differentiate their channel from some other piecemeal provision. Are NHS or social care commissioners likely to be any better at valuing creative but expensive care, or ideas that don’t fit the standard mold of policy that is in fashion at the moment? NHS and social care managers are also inclined to interfere with openness with patients to protect the market view of their bit of the health service; I suspect this is the main source of the problems over the Care Quality Commission, also in the papers over the last few weeks. It’s not that the people at the top were inherently evil-doers, it’s that in the environment that our politicians have created in which everything, including our health and social care, is bought and sold, the selling bit of the job means that managers have to abandon honest human relationships in favour of brand management. And they’ve learned as part of the influence of private sector management on the public sector this over the past twenty years, so they’ve lost the public ethos of service and concern for patients.

But the real problem with compensation claims for medical negligence is that it deals with a particular kind of medicine, but not the broad care services of which medicine is a part which we have seen in the news lately. What is the point of suing a doctor for compensation if the problem is with the coordination and integration of a whole care service? Nurses and other professionals, including social workers, are involved and all kinds of provision, which are not the subject of a prescription or an operation. One bad thing about this is that it encourages people to see doctors as the people ‘in charge’ who order everyone else around, and the doctors to feel that they are entitled to do that because they are legally responsible if the care goes wrong. This creates the wrong attitudes among some doctors and encourages a handmaiden approach among other professionals rather than multiprofessional teamwork.

What is the role of medical negligence in end-of-life care, for example. Yes, it is possible that the doctor gets their dose of morphine wrong, or a nurse fails to respond to a frustrating patient on the buzzer for the nth time, but the quality of the service mainly depends on a seamless integration of a wide range of helpers mainly in people’s own homes. This may include social work, whose role is particularly undefined and poorly understood by everyone involved, and so therefore not readily liable to some kind of compensation culture. We do need a sensible way of judging whether someone got a good deal for services like these when they are dissatisfied or need compensation. And since hospices are small providers in an increasingly commercialised world, you do wonder whether the new NHS is going to mean that marketing is going to be to the fore and admitting mistakes and improving service quality will fall by the wayside.

And what about the medical care which fails to acknowledge end-of-life care at all? Most people who have worked in hospices have experienced the well-off patient (and occasionally not so well-off) transferred at the last minute from the private hospital whose cancer doctor has been telling them for weeks that the latest (expensively charged-for) procedure is certainly going to cure them, and who then need to get them off the premises quickly before they actually die. I’ve noted before that the caring ads of the private insurers that you see selling their cancer care wares, while increasingly recognising the psychological elements of care that they need to be concerned with, still fail to mention that actually quite a lot of people still die from cancer.

NHS merger proposal that includes patient benefit in anti-competition decision

Some months ago, I commented on a report of a foreign competition review of hospital mergers and said it would be interesting to see what the UK competition authorities did, faced with a hospital merger. Here is a lawyer’s view of the first one. The Office of Fair Trading looked at a proposed merger between hospital trusts around Bournemouth, decided they were potentially anti-competitive and referred them to the Competition Commission. As with the foreign case that I commented upon, the main concern, reported by the lawyer, were:

It is clear from this first case that the OFT’s chief concern was that the merger would result in diminished choice for patients and commissioning groups and therefore reduce incentives to compete on quality, which would have a detrimental impact on patients using these services.

The OFT identified at least two key parameters for competition between the Trusts:

1 competing to attract patients; and

2 competing for funding from commissioners of NHS services.

What this tells us is that there is a potential, when looking at proposed mergers in the NHS, for someone outside the NHS to look at them and see what the evidence is that patients will benefit, including convenient access, not at what the managers say about how they can save money. This provides a new area where campaigners looking at NHS reorganisations can apply pressure to the healthcare system. No independent body has ever looked before at this kind of evidence.

This is potentially a good counter-balance to financial pressures towards NHS mergers that disadvantage patients, if campaigners can use it.

Here is the link to the report: OFT’s first review of NHS Foundation Trust merger – Lexology.

Whistleblowing about private providers will be discouraged in the new privatising NHS

Regular readers of my blogs will know of my enthusiasm for the publications of the House of Commons Library, which give independent guidance to MPs in all sorts of things, but often it is aimed at situations where they are trying to help their constiutents. There’s a recent very useful example on whistleblowing in the NHS. You can download it from the Parliament website.

Link to Parliament website page.

This makes it very clear that the NHS is supposed to support its staff in raising issues about patient care and organisational problems, and it covers the law according to the Public Interest Disclosure Act 1998, and various statutory guides and legal developments, all with links on the internet. Aren’t MPs lucky to have this service, and isn’t it good we get access to it too?

One useful point it makes is the difference between allegations and disclosures. Staff are protected from being persecuted by their employers if they disclose information, but not if they make allegations. Here is a quotation, in the publication, from a Tolley’s employment law guide discussion of a case that describes the difference (an EAT is an Employment Appeal Tribunal):

…The EAT held that there was a distinction between communicating “information” (which is protected) and making an “allegation” which does not convey facts…which is not protected…The distinction is well illustrated by an example given in Mrs Justice Slade’s judgment in relation to the state of a hospital. To say “health and safety requirements are not being complied with” is an unprotected allegation. To say “the wards of the hospital have not been cleaned for two weeks and sharps were left lying around” is conveying “information” and is protected.

You might ask why responsible employers would not want to have this kind of information given to them so that they can act. One of the answers is the assumption that employees are there to do what the management tells them, not what is good for the people that they serve. This attitude has been encouraged by the ‘new public management’ or managerialism that has been rife over the past twenty years. This says that managing effectively is more important than professional responsibilities or good service, and disclosing information, particularly if it is likely to make the organisation liable for damages for neglect or worse, is anathema to the manager’s right to manage: how can you manage people if they have the right to let out all the secrets of your organisation?

This kind of attitude has infected the NHS from the private sector, where loyalty to your employer is paramount. A very experienced nurse friend was recently forced to work for a private medical practice because the NHS would not give her flexible enough work to enable her to care for her children. Faced with a patient worried about whether the treatment was working for her, she worked through the various ways in which the patient could raise her concerns, only to be told by the doctor that they didn’t want any of that NHS nonsense about patients’ rights here. We can see this kind of attitude in the reaction of some of the private clinics to the pip breast implants disaster.

We all need to be concerned about this, because since a lot of the NHS is going to be contracted out to private suppliers in the near future, the rights to whistle-blow over bad patient care is going to disappear. I can imagine the government would say that the right will still be there, but the reality will be that the pressure from employers not to raise any concerns about care standards will increase. And what will NHS employees do, faced with concerns about the people they are contracting with? Not a lot, if my experience of how they deal with unsavoury or just insipid care homes at the moment is anything to go by. Increasingly, the difficulties of contracted private providers will be ‘commercially confidential’ and there will be pressure not to disclose information which might be against the interests of private providers to the NHS.

Another weakness of this guide is its focus on the NHS, rather than health and social care. Really whistleblowing about healthcare should be possible from social care and vice versa; the separation of the services means that it’s not clear that you are protected if you disclose information about the other.

No comeback for poor care in privatised healthcare?

The Care Quality Commission (the health and social care regulator) has published its annual ‘state of care’ report, which has had some press coverage, mainly about poor standards of staffing and respect in care in quite a lot of nursing homes and hospitals.

Link to the CQC ‘State of Care’ report here, or click the pic.

It is interesting to surmise what the consequences of this kind of information is. One sign is an interesting article by a lawyer who supports patients making ‘clinical negligence’ claims. She says that because older people have more complex needs, they are likely to be let down by poor staffing, and poor record-keeping may mean there is no comeback, because there is not sufficient evidence of negligence in the records.

I’m more cynical than she is. Could private sector providers (where recording is worse anyway) purposely degrade recording so that there is no comeback? Will this be another consequence of poor private sector care provision in the newly privatised NHS?

Link to the law commentary.

Here’s an excerpt from what she says:

It is a frankly astonishing that almost a quarter of the homes inspected did not have adequate staffing levels. These are the nursing homes which provide for complex health needs. 16% of hospital services failed to meet the staffing requirement levels that the CQC considered appropriate. This is a significant number of hospitals failing to provide sufficient staff to deal with care needs of patients.

The other issue which was equally important, particularly for lawyers, is that as a result of the increased pressure on limited employees, the level of appropriate record-keeping was deteriorating. In addition, so was the management of medicines.

As lawyers we depend a great deal on the medical records that were contemporaneously completed. In the private sector medical records can often be poor. In the NHS sector they tend to be more thorough. It is a worrying aspect of the report that across the board record-keeping was beginning to deteriorate. Not all institutions were poor, but a significant minority were not providing the level of record-keeping that should be expected.

And further on:

For clinical negligence lawyers it is likely that we will see an increase in potential claims to consider. What is worrying, however, in addition is that, as lawyers, we may not be able to ascertain fully what is happening because the medical records have not been completed properly.

Whilst by far the majority of inspections clearly demonstrated adequate care, there is a significant minority where the care does not meet the standard and where it is much more likely that serious accidents will occur. At the same time as the legal system is changing so that it will become more difficult for claimants to seek compensation for clinical negligence, we are dealing with a health care system which is failing a number of its own clients. The overall result may be fewer claims to the NHS and other bodies, but that does not mean that the negligence is not happening. It does not solve the problem of what happens after somebody has had an accident and requires further care as a result.

National End of Life Care Prog giveaway

The National End of Life Care Programme says it’s got hard copies of its publications to give away free. What do you think its logo signifies? Stepping delicately towards the end of life?

NEOLCP publications website.

Liverpool Care Pathway has become a tickbox exercise, not a thoughtful shared process

As I said in a recent post, there have been increasing concerns about the Liverpool Care Pathway, and this has finally led the government to set up some inquiries to get the heat out of the situation.

Link to BBC News report about the inquiries.

The BBC’s Health correspondent, Nick Triggle has written a clear and balanced account of the issues.

Link to Nick Triggle’s article.

 

 

 

 

 

 

 

The newspapers (the Telegraph) who have been drumming up criticism have reported the Department of Health statements. Attached to these articles are some good comments.

Link to the Telegraph article and comments.

 

 

 

 

 

 

 

 

Link to an alarmist Mail Online article

My comment

It’s important to understand what the LCP is. It is a protocol, basically a list of things to do, once you have identified that a patient is nearing the end of their lives. The purpose of the LCP was originally to transfer experience of hospice care to general hospitals. An important aspect of the LCP is discussion with patients and relatives about what you are doing.

But the situation is different. Hospitals are busy places focused on treatment, whereas hospices are calmer environments focused on care. Hospitals cover a range of illnesses at lots of different stages of treatment, whereas hospices deal mainly with cancer (still) and other illnesses where there is a clear prognosis that the patient is nearing the end of their lives. The different situations mean that identifying when someone is approaching the end of life and then having a thoughtful discussion with patients and their relatives is more difficult to do in hospitals. It requires judgment and planning, but the hurried ‘acute treatment’ environment in many general hospitals does not make that very easy.

Another problem is that the government has pushed for the rolling out of LCP to improve the care of patients in hospitals; there is talk of financial incentives as ‘bribes’ to clear beds of people who are dying. But the real problem is the assumption that a list of things to do can be ‘rolled out’. What happens is that it becomes a tickbox exercise instead of a thoughtful shared process. And this unfortunate campaign against it is the result.

All-Party Parliamentary Groups relevant to palliative and end-of-life care

 

I’ve recently been looking at the work of All-Party Parliamentary Groups on palliative and end-of-life care and have compiled a listing of links to groups.

Link to listing of links to All-Party Parliamentary Groups relevant to palliative and end-of-life care.