2. Putting patients and the public first
Well, if anyone in healthcare does not do this already then they should find another job. The vast majority of people in the NHS and this accusatory title is an insult to some extremely dedicated people. So let's have a look how the government intends to "put patients and the public first".
Shared decision-making: nothing about me without me
This section is full of platitudes and light on details. However, there are a couple of statements that are interesting.
"We want the principle of "shared decision-making" to become the norm: no decision about me without me." (2.3)
Of course this should always be the case, and in my experience, it has always been the case. However, we do have to question how this will work in practice. What happens for people who are unable to understand the choices? What happens for people who are easily confused or are hard of hearing? Advocacy is very important here. Does the "shared decision-making" make the patient responsible in part for their treatment? We need to know whether this statement is intended to empower patients, or whether it is intended to put more responsibility on them.
"The new NHS Commissioning Board will champion patient and carer involvement" (2.4)
The NHS Commissioning Board is a new quango and it is unclear at the moment what they will do. I will write a separate blog post on it, but for now consider it to be the quango in charge of privatising the NHS.
The idea of "patient and carer involvement" must be scrutinised carefully. Other Conservative documents on public health stress how they think that it is our fault that we are patients. At the moment the NHS is neutral about whose fault caused the condition, they treat health issues and as part of this clinicians may make recommendations for the patient to lead a healthier life. There are worrying statements from the more right-wing health pressure groups about things like charging patients if they need treatment for injuries sustained when drunk, or charging for treatment for health issues caused by a poor diet.
The government must pledge that the NHS will preserve the neutral attitude when it comes to free at the point of delivery, and will not break that principle by making patients responsible for their condition.
An NHS information revolution
Information is important. It is important for individuals and, in aggregate, it is important for epidemiologists. It is interesting that at a time when the government is talking about getting rid of the most systematic mechanism to gather information (the census) the Department of Health is talking about gathering more information. Gathering and making available information inevitably requires IT projects, yet the government has pledged to cancel the existing IT projects in the NHS. Information held on IT systems must be secure and must only be made available to authorised users, yet the government is cancelling the country-wide personal authentication system planned by the previous government (ID cards, note that I am not an advocate of compulsory ID cards, just pointing out one possible use for them). This government is full of contradictions.
"Our aim is to give people access to comprehensive, trustworthy and easy to understand information from a range of sources on conditions, treatments, lifestyle choices and how to look after their own and their family's health." (2.6)
We already have this information through the NHS Choices website, but more reliable information is always welcome. The previous government had an ambitious plan to provide more information through websites run by Strategic Health Authorities, but the government has now decided to abolish SHAs. It is unclear whether the SHA website plans will be cancelled or whether the government will reuse them.
"Information generated by patients themselves will be critical to this process, and will include much wider use of effective tools like Patient-Reported Outcome Measures (PROMS), patient experience data, and real-time feedback." (2.7)
It is important that patients' views are taken into account, and usually the best way to do this is through advocacy groups. Patient feedback is also important, but it must not be a box-ticking exercise. Patients recovering from treatment are often unwilling or unable to respond, so surveys after the patient has recovered are also important.
"As in many other services, this feedback from patients, carers and families, and staff will help to inform other people with similar conditions to make the right choice of hospital or clinical department and will encourage providers to be more responsive." (2.8)
"Information will improve accountability: in future, it will be far easier for the public to see where unacceptable services are being provided and to exert local pressure for them to be improved." (2.9)
This is where it gets a bit sinister. The government intends to create a "healthcare market" where problems in the service provided by a hospital are handled by market forces. That is, if a hospital is failing then patients will not choose the hospital and the hospital will be forced to improve their care. The problem with this is that the hospital has to be failing before action is taken, and this means that patients will suffer.
The proper way is for the information to be used by regulators to take prompt action to make hospitals improve their care, and in this way the improvements are likely to be made quicker than waiting for a hospital to fail and for patients to leave.
"More information about commissioning of healthcare will also improve public accountability. Wherever possible, we will ensure that information about services is published on a commissioner basis. We will also publish assessments of how well commissioners are performing, so that they are held to account for their use of public money." (2.10)
Information about commissioning will be vitally important. It must be an open process and challengeable. The likelihood is that most GPs will not commission care themselves; instead, they are more likely to buy-in the commissioning services from a private company like Tribal, Serco or BUPA. In this situation the public will need to know why a GP commissions a private hospital over an NHS hospital, or a distant hospital over a local hospital. This level of transparency will put a break on the privatisation of NHS services and consequently the government will be unwilling to allow it to occur.
"We will enable patients to have control of their health records. This will start with access to the records held by their GP and over time this will extend to health records held by all providers." (2.11)
It seems very odd that the white paper mentions this since you already have this right. NHS Choices says this:
"Under the Data Protection Act 1998, you have a legal right to access your health records. If you want to see your health records, you can ask at your GP surgery, and arrange a time to come in and read them. You don't have to give a reason for wanting to see your records. ... Your request to see your [hospital] records will be forwarded to the health records manager. The manager will decide whether your request will be approved. Your request will usually only be refused if your records manager, GP, or other health professional believes that information in the records is likely to cause you, or another person, serious harm."
In effect, the Data Protection Act 1998 says that you can have access to all your health records whether they are held by a GP, hospital, optician or dentist. I have no idea why the white paper mentions this unless there are ulterior motives.
"Our aim is that people should be able to share their records with third parties, such as support groups for patients, who can help patients understand their records and manage their condition better. We will make it simple for a patient to download their record and pass it, in a standard format, to any organisation of their choice." (2.12)
Will doctors agree to this, what about patient confidentiality? Will patients be made fully aware about the dangers of losing that confidentiality?
So who are these "third parties"? Do they include, perhaps, life insurance companies? Imagine this scenario, you apply for life insurance and the company says that you could get a discount if you are in good health and so could you give them access to your health records to prove it? If you refuse access then it would appear that you have something to hide, so most people will be persuaded to share their health records with the insurance company. What happens when the company sees your records and they decide to reject your application (bear in mind that most companies ask you if you have had any applications rejected, so just one rejection may make you uninsurable)? What about if they accept your application, store the details and then at a later stage reject a claim because of a condition that you had treated years before? This plan is fraught with problems, so it needs a lot of scrutiny.
"The NHS Commissioning Board will determine these standards but they will include, for example, record keeping, data sharing capabilities, efficiency of data transfer and data security." (2.16)
So the NHS Commissioning Board gets involved again. They are clearly people to be wary of.
Increased choice and control
Yes, we want both, but the problem is are we capable of choosing and if we get control will we do the right thing? If we get choice and control, doesn't that mean that we are now culpable? Apparently we will be:
"We are also clear that increasing patient choice is not a one-way street. In return for greater choice and control, patients should accept responsibility for the choices they make, concordance with treatment programmes and the implications for their lifestyle." (2.18)
This implies that if you make a choice and that is the wrong choice then it will be your fault. Although this may seem fair, we have to determine when it is you who is making the decisions or whether the clinician is doing this for you and making it appear that you made the decision: simply handing the responsibility and culpability over to you.
"Increase the current offer of choice of any provider significantly ... choice of any willing provider ... " (2.20)
"We expect choice of treatment and provider to become the reality for patients in the vast majority of NHS-funded services by no later than 2013/14." (2.23)
This is the government's drive to bring in the private sector. If there is more private sector provision then there will be less NHS provider provision and the consequence of this will be closure of NHS hospitals or "merges" with private sector hospitals. I will have more to say about this in a later blog post because there are some truly horrific things in store for your local NHS hospital. (Sorry, did I say your hospital? It won't be yours any more, the government intends to hand it to someone else.)
"Introduce choice of named consultant-led team for elective care by April 2011 where clinically appropriate." (2.20)
Is this practical, what happens if you choose a popular consultant? This will lead to the case where some consultants will have more patients than they can treat? The term "named consultant-led team" simply means that the "named consultant" has his/her name above the door and you'll most likely be treated by one of their "team", so the policy may be meaningless.
How will these "named consultant" make a name? Does this mean that we will have doctors advertising their wares? More concerning, is this policy the fore-runner of consultants creating their own provider companies? Again, we need more information and we need to know the real reason for the policy.
"Give every patient a clear right to choose to register with any GP practice they want with an open list, without being restricted by where they live." (2.20)
Is this practical? I will cover GP commissioning in another blog post but for now: The idea is that GPs will hold the entire health budget for the patients they treat. GPs will form "consortia" with other GP practices so that they cover roughly 100,000 people and then the consortia will determine which providers (hospitals) will treat the patients, and what treatments will be available.
So, if one GP practice offers an expensive cancer drug to their patients because they have a budget surplus and they can afford to provide the drug, won't this lead to cancer patients from other areas registering so that they too can get the drug? Won't this lead to healthcare tourism within the country?
As GPs budgets change and commissioning decisions change, won't we find that patients will change GPs frequently? Perhaps we will see a market like we have with electricity suppliers where you have to reassess your supplier every few months to make sure that you are getting the best deal. Won't this happen to GPs, and if so, won't it kill the idea of having a "family doctor"?
I am all for the choice of GPs, but I am not in favour of the postcode lottery that GP commissioning will cause.
"As part of personalised care planning, the Department will encourage further pilots to come forward and explore the potential for introducing a right to a personal health budget in discrete areas such as NHS continuing care." (2.22)
Lord Darzi suggested this policy. I am not so sure it is a good idea. My concerns are that the patient is expected to make decisions and be responsible about those decisions. I am also wary about patients being told that they are an effective drain on society because of the cost of their care: I have never been in favour of patients seeing the bill for their care (some right-wing suggests that this should happen: the patient sees the bill, then the NHS pays). Personal budgets will tell a patient with a chronic condition how expensive they are.
"In future, the NHS Commissioning Board will have a key role in promoting and extending choice and control. It will be responsible for developing and agreeing with the Secretary of State guarantees for patients about the choices they can make, in order to provide clarity for patients and providers alike, ensuring the advice of Monitor is sought on any implications for competition." (2.23)
So who is it that will be making commissioning choices about care, "GP commissioning consortia" or the NHS Commissioning Board? My guess is that the unaccountable quango, the NHS Commissioning Board, will have the final decision and their policy will be to favour private healthcare. The NHS Commissioning Board is the NHS privatisation board.
The white paper makes few guarantees about your local NHS hospital. The term "any willing provider" means that private hospitals will more often than not be chosen by commissioners. The only guaranteed service from your hospital will be A&E:
"[The government will] Create a presumption that all patients will have choice and control over their care and treatment, and choice of any willing provider wherever relevant (it will not be appropriate for all services – for example, emergency ambulance admissions to A&E)" (2.20)
The government seems very keen on blaming you for your medical condition and making you responsible for it. You will also be responsible for deciding whether your local hospital is up to scratch. It all looks like the government expects you to do a lot of things, and you have to get well too! The government really hate NHS hospitals: I mean they seriously hate them. I will explain in more detail why and what this will mean in a later blog. It has to be said that what they really love is private healthcare. So I need to address the issue of private care.
"the duty of directors is to act in a way which they consider most likely to promote the success of the company for the benefit of its shareholders as a whole and that, in doing so, they will need to have regard where appropriate to long term factors, the interests of other stakeholders and the community, and the company's reputation"
This means that the "customer" or "services user" is not put first, the shareholder is always put first. Go back to the title of this section in the white paper: putting patients and the public first. Since by law private companies cannot put the customer first it means that private companies should not be used to provide healthcare.