Are You Involved?

Whose Patient Are You?

There really is just one type of patient: a patient. A patient is a person who is ill and needs care, simple as that. It could be elective or emergency care, but it is still care. It could be a single episode, or a lifetime of treatment for a long term condition, but it is still care. The patient is the receiver of care.

When pushed, I would set up a dividing line between NHS and private patients for the simple reason that private patients have made a conscious decision that they want to opt out, and are choosing not to be the same as everyone else. People who choose to have private care have the same rights to NHS care as the rest of us, but they choose - for a variety of reasons - not to exercise those rights. It is their choice, but they can opt back in any time they like. However, for the rest of us, private care is not an option, which is why it is so important to defend our access to the NHS and to get involved in the improvement of NHS care.

Thus, there are just two types of patients: private patients and NHS patients. This is pertinent to this blog because this is about public and patient involvement which is a concept unique to the NHS. The relationship private patients have with their healthcare provider is a simple customer-provider relationship, if you do not like the service you take your money to another provider. The relationship an NHS patient has with their healthcare provider is far more complicated than this. NHS patients do not have control of the money spent with providers and I would argue it is incredibly important that they don't. The reason is that providing good care is very different to providing a profitable service. Many NHS services cost more than the money provided, so "taking your money elsewhere" is often a case of "taking the deficit elsewhere".

Which Parts of the NHS Do You Use?

The NHS is often viewed by managers and politicians as primary, secondary and tertiary care, but from the patients perspective this is either GPs (primary care) or hospitals (secondary and tertiary care). There is also a dividing line between acute (or physical health) and mental health; and typically, if you have a mental health issue which results in hospitalising that will be in a mental health hospital even if you have a physical health condition that would otherwise mean that you should be in an acute hospital. In addition, there is a grey area within the NHS: community health services. As the name suggests these are services delivered in the community, in small clinics or in the patient's home. Community services are largely a historical relic of local authority involvement in healthcare before the establishment of the NHS. You could argue that community services are primary care that should be delivered by GPs, or alternatively, you could argue that they are step-down services of hospitals, and in some cases (like Continuing Healthcare) hospital services delivered in the patient's home. In some areas community services are delivered by acute hospital trusts, in others they are delivery by mental health trusts, and in others they are delivered by private companies.

To us patients, we need care from the NHS as a whole. We may have physical or mental issues, we may need episodic care or have a long term condition needing long term care. We may need the care in our homes, in a GP surgery, a community clinic or in a hospital. In all cases we are simply a patient. Treating us as a patient rather than a consumer of multiple services is the philosophy behind whole person care.

Getting Involved

Public and Patient Involvement (PPI) is a legal responsibility of NHS organisations. The Health and Social Care Act 2012 (HSCA) created two new commissioners, NHS England and Clinical Commissioning Groups (CCGs) and the Act created a responsibility for PPI for both (as outlined in this document by National Voices). Section 23 and section 26 of the Act, add section 13H and two sections 14U and 14Z2 to the NHS Act 2006 to place a duty of PPI on, respectively, NHS England (called "The Board" in the Act) and CCGs.

PPI is a legal requirement of NHS commissioners and there are requirements for NHS providers to have patient involvement too; private providers of NHS care do not have to have PPI and consequently do not.

An NHS England Patient?

NHS England commissions primary care (GPs, opticians, dentists, pharmacies), care for prisoners and military personnel. They also commission tertiary care and care for rare conditions. The HSCA places a duty for NHS England to "promote the involvement of patients, and their carers and representatives (if any)" in the decision making of "the prevention or diagnosis of illness in the patients" and "their care or treatment". NHS England has put some effort into the PPI for rare conditions but have been largely quiet about the much bigger issue of PPI in the commissioning of primary care. Primary care is commissioned on a regional basis by the so-called Area Teams. These rather shadowy groups do not hold meetings in public and their board papers are not published, so the public do not know what these groups are doing, nor able to challenge their decisions.

Logically, the Area Team should be recruiting patients through GPs, opticians, dentists and pharmacies because they commission the services patients use from these providers, but there is little evidence that Area Teams are doing this. If you want to be involved in the commissioning carried out by your Area Team there is little information about who to contact.

Shadowy is perhaps being too kind to them, the Area Teams seem to want to avoid the public entirely.

A Clinical Commissioning Group Patient?

Clinical Commissioning Groups commission secondary care (ie hospital care), mental health, GP out of hours services, urgent care services like ambulance and 111, and community services. CCGs are membership organisations in that every GP practice has to be a member of a CCG. (These GP members of CCGs are involved in their decision making, but unfortunately the so-called members councils emulate NHS England by meeting in secret and refusing to publish their minutes.)

The new section 14U that the HSCA adds to the 2006 NHS Act a duty to promote PPI on CCGs, and in addition it says that NHS England should publish guidance on how CCGs should do this. This statement appears to be the case of the tail wagging the dog: CCGs can tell NHS England a lot more about PPI than the other way around. The new section 14Z2 goes into more detail about the responsibilities of CCGs. This says that patients should be involved "in the planning of the commissioning arrangements" and in the "changes in the commissioning arrangements" of the CCG.

As part of their authorisation CCGs had to provide their PPI strategies to, and these be approved by the largely PPI-free NHS England. Consequently every CCG has some form of Patient Participation Group (PPG), and most of these are based upon the PPGs of their member GP practices.

A GP Practice Patient?

General Practices have had PPGs for many years. PPGs are paid for through Directed Enhanced Services (DES) (until the end of this financial year) so GPs are actually paid to provide them. Most practices take this money because they recognise the benefit that patient feedback from a PPG can provide. One requirement of the DES payments is the annual patient survey which practices can use, through locally determined questions, what patients want and how the practice can improve their facilities and services.

There is another distinct advantage that practices gain from having a PPG that GPs are only now starting to realise: CQC. If a practice is CQC inspected the first thing the inspector will ask is "can I talk with your PPG?". A negative response is not going to allow the rest of the inspection to go well, and, as practices are starting to learn, a friendly PPG can do wonders for their CQC rating.

Or A Foundation Trust Patient?

Foundation Trusts (FTs) are a special case because they are the only part of the NHS where there is elected patient representation. Foundation Trusts have a membership (usually opt-in for public and patient membership, but opt-out for staff membership). The membership elects governors to the FT's Council of Governors. More than half of the Council must be public or patient elected governors and the remainder of the Council are elected staff governors and stakeholder appointed governors. The public and patient elected governors represent the constituencies that elect them but the HSCA (section 151(4)) says that in general governors "represent the interests of the members of the corporation as a whole and the interests of the public" (the "corporation" here refers to Public Benefit Corporation which is the legal term for a Foundation Trust).

In general governors have a responsibility "to hold the non-executive directors individually and collectively to account for the performance of the board of directors". Foundation Trust Board of Directors meetings must be held in public (section 152(5)) however, as a public body it means that the Foundation Trust can use the Public Bodies (Admission to Meetings) Act 1960 to exclude the public (which includes governors) from parts of the Board meeting where it "would be prejudicial to the public interest by reason of the confidential nature". In spite of this, Foundation Trust governors have a right (section 152(4)) to have access to all Board minutes including the minutes of the confidential section of the Board from which they are excluded, so although governors cannot attend the confidential section, they can see what was said.

Other than the general responsibility to hold non-executive directors "to account for the performance of the board of directors", there are specific responsibilities. For example, if a Foundation Trust intends to increase its income from private patients by more than 5% of the total income of the trust (an event that is as a rare as finding a hen's tooth) more than half of the Council of Governors must approve. In addition, governors must inform the Board of Directors whether it is satisfied that treating private patients "will not to any significant extent interfere" with the treatment of NHS patients (section 164(3)). This last responsibility is fairly toothless because governors do not have any power to stop an FT from treating private patients.

The two most powerful powers of governors are to appoint and remove non-executive directors, and to determine whether significant transactions should go ahead. Governors appoint the non-executive directors (NEDs, including the Chair of the trust) and can remove them, governors also determine the pay of these directors. NEDs are members of of the Board of Directors, and board decisions are made collectively by all directors. NEDs do not have an operational role, they do not manage the trust, instead their role is to challenge the executive directors. NEDs also form the appointments committee that appoint, and determine the pay of the executive directors. Although the NEDs appoint and remove the chief executive, governors have to approve such decisions. Possibly the most powerful responsibility of governors is covered by the term significant transaction (section 167). The Foundation Trust can only enter into a significant transaction if more than half of governors approve. The Act does not define what a significant transaction is other than saying that they must be specified in the trust's constitution. Any changes to the constitution must be approved by Governors and the trust Board of Directors.

What About Private Providers?

The government says that there is a "fair playing field" when it comes to commissioning services, however, the one area where the playing field is not "fair" is where it comes to patient involvement and patient representation. There is no legislation that requires private providers to involve patients in the provision of the care they provide. There is no legislation that requires private providers to have public board meetings or publish their board minutes. If the provider is a charity or a social enterprise, they will have their own rules about patient involvement, however, usually such third sector providers behave as if they are private businesses when providing NHS commissioned services.

If you are offered an NHS service from a private provider bear in mind that no patient was involved in designing the service. No patient is involved in the continuing improvement of the service nor in holding the senior management to account for the service. As a patient you will not have an opportunity to be consulted about the provision of the service. All of this is worth bearing in mind before you consider using a private provider for your NHS care.

So What Sort Of Patient Are You?

If you want to get involved in the planning and delivery of NHS services, you have lots of opportunities. The problem is that the different parts of the NHS do PPI in different ways and some parts (particularly commissioners) define involvement as "help us performance manage those other people". When you combine this with the total lack of PPI in the private sector, it all adds up to a mess.

Patient involvement in improving services come from two perspectives: the provider and the commissioner. The commissioner designs the service and monitors delivery, patients can be involved in the designing of a service, and as the recipient of the service, they can be involved in feeding back how well the service is performing. Commissioners monitor services to enforce the contracts they have with the providers, most contracts have some kind of penalty or incentive and often patient feedback is involved in these. Contractually, providers clearly want to avoid the penalties and gain the incentives, so patient participation is important to them.

For example, patients join a GP practice PPG to help improve the services at the GP practice from a provider's perspective. GPs are mostly commissioned by NHS England Area Teams (there are a few GP services that CCGs commission) but the lack of PPI in Area Teams means that there is little commissioner patient involvement in improving GP services. It is very clear that patients join GP PPGs to improve GP services, if they want to improve hospital services the obvious route is to join a hospital PPG (or equivalent PPI). However, most CCGs draw from GP PPGs to form their own patient groups. CCGs do not provide services, and they do not commission GPs, so a patient who joined a PPG to be involved in the improvement of their GP services will find that they are asked by the CCG to improve services they originally did not volunteer to be involved with.

CCG patient participation groups are involved in the commissioning, and improving, of hospital services, mental health services, community services, urgent care services and out of hours through the commissioner-provider relationship. In other words, very few services that involve GPs.

Conflicts of Interest

Commissioners are quite open about that they will use the contract with the provider as a lever to improve services: threats of commissioning another provider, or moving the service to the free-for-all that is Any Qualified Provider. Collaboration has largely disappeared due to the recently introduced procurement regulations.

Gone are the days when the patient group of a provider could collaborate with commissioners to improve the service. The patients of a provider's PPG will have direct experience of the service and are a valuable resource: a patient involved with a public sector provider will have more experience about the service being commissioned than a patient who is not involved with the provider. Thus, it makes a lot of sense for a CCG to involve those patients in redesign of those services. Similarly, if a CCG wants to improve a service, the best course of action would be to consult the existing service provider, since that provider will be more of an expert about the delivery of the service than the commissioner. However, CCGs wary of litigation under the new procurement regulations are reluctant to seek advice from those providers and their patient groups because they may appear to be giving unfair competitive advantage to those providers. From a PPI perspective, if a CCG involves a patient in commissioning and that patient is a member of a PPI group at a provider, that could be regarded as being anti-competitive.

It works the other way around too: there is no incentive for an existing provider to help design services if those services will be put out to competitive tender with the possibility that the provider may not win the tender. The new procurement regulations are a barrier to the improvement of services.

CCGs are rather inconsistent in applying the strictures of the procurement regulations. CCGs can commission Locally Enhanced Services from GPs, and these may replace services formerly delivered in secondary care (so-called "move services to the community"). Since CCGs are membership organisations where the members are GP practices, CCGs have to take steps to prevent "conflict of interest" when awarding LES to member GPs. However, these steps are usually just for show. For example, the GP members of a governance board declining to take part in a vote that awards services to GPs when the decision has already been made out of the boardroom. This, we are told, is acceptable. Furthermore, if a CCG involves its patient group in commissioning LES there is a high chance that it will involve patients who are members of the PPGs of the GP practices who would benefit.

I Am Just A Patient!

Patients are patients, they are not your patient or our patient, they are NHS patients. It is quite clear that public and patient involvement is getting fragmented because of the new competition-based procurement regulations. Patients are excluded to prevent perceived "conflict of interests", while real conflicts are not being addressed. Patient involvement is vital to the NHS, not only does it give a legitimacy to the commissioning by a public organisation, but it has the potential to make significant improvements to the services being commissioned. No patient is restricted to one provider or one service, no patient pathway is limited like that, so why should patient involvement be limited?

Before the fragmentation of services and PPI gets much further we need to stop and rethink. Ultimately we need to remove competition from healthcare planning because it is resulting in competition lawyers determining which providers are commissioned. While we wait for that to happen, the next best thing would be a declaration from the Secretary of State that patients are far more important than competition laws and to tell commissioners that they cannot exclude patients from commissioning on the grounds of "conflict of interest". To ensure that such a declaration is followed, a neutral third party should have not only the responsibility to ensure that patient involvement occurs, but also to enforce it. Such a neutral third party should have the same power over all commissioners and providers: NHS England, NHS England Area Teams, CCGs, Local Authority social care commissioners, NHS providers, GPs and private providers.

At the moment there is no such patient organisation, but there is a possibility that local Healthwatch could be given new powers, responsibilities and resources to do this. Such a revitalised Healthwatch would be able to support patient groups so that they are independent of providers and commissioners, being able to discuss the issues that concern the patients. Healthwatch could be given the power to delay the commissioning of a service on the groups of inadequate patient involvement. It could also have the responsibility to ensure that all providers (NHS and private) have patient engagement and involvement in the delivery of services. Such power would give meaning to Healthwatch.

(Richard Blogger is an elected Foundation Trust governor and a patient representative at his local CCG PPG. He has been excluded from patient involvement in commissioning by the CCG on the grounds of "conflict of interests".)