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'A complex web of changes, the onus is on commissioners to reach out to patients and service users to ensure they are fully engaged' by Paul Clift
Date: 28 Nov 2013
Author: Paul Clift
This content was originally published on the MEDFASH website as an e-feature on 28th November 2013 and it is reproduced here with kind permission by MEDFASH.
Paul Clift is a Patient/Carer representative on the HIV Clinical Reference Group. He also works as a Patient Representative at King’s College Hospital NHS Foundation Trust. In this month’s eFeature he writes in a personal capacity and offers his observations on the nature and potential impact of the changes introduced by the 2012 Health and Social Care Act. He emphasises that in the face of a complex web of changes, the onus is on commissioners to reach out to patients and service users to ensure they are fully engaged in discussions on service developments and provision.
Impact of New NHS?
The actual impact on patients of the Health and Social Care Act is not yet easy to determine. What we need but do not yet have is a piece of research that asks patients whether the service they receive has changed and, if so, how and to what degree. The Act came into effect only in April of this year (2013) and so it is too soon to be sure if changes to aspects of the service are because of the Act or if they would have happened anyway. The overriding problem just now, it seems to me, is the question of what the biggest upheaval in the NHS since 1948 actually comprises and what repercussions this upheaval might be reasonably expected to produce. In the absence of research data then, we must refer back to intelligent comment from a range of sources.
First though, let’s remind ourselves of the basics: the NHS was designed in the 1940s to be a universal health service, providing health care and treatment free at the point of delivery. The principle of ‘universality’ has a default setting of social inclusion in that allows it to address the healthcare needs of a population, however diverse it may be, and is built on the principle of social coherence, inclusion, responsibility. In other words, the NHS and our relationship with it was a form of social contract in which we as tax-payers contribute according to our means and receive according to our needs. This is a fine principle, because it is based on actual need and actual ability to pay. The importance of this to HIV is evident as soon as we consider the demographics of the HIV population: in England, as in the UK overall, HIV affects disproportionately groups that are already marginalised or vulnerable, including for example gay men and migrant women and men. Such groups include people who do not have sufficient stocks of social capital (and other forms of capital) to negotiate their way through, and engage effectively with, complex systems. As a public service, the NHS has a further default setting of public accountability: the Secretary of State for Health is responsible for the nation’s health and that all of us who are NHS members of staff are public servants – ultimately we are all publicly accountable.
With the Health and Social Care Act of 2012, that stands to change. The first changes that those of us who work in the NHS may have noticed is the removal of a tranche of middle management at the precise moment when skilled and experienced management was needed to oversee significant organisational restructuring. In HIV, this is most apparent in the splitting apart, for commissioning purposes, of HIV and sexual health. HIV is now commissioned at a national (i.e. England) level, with its commissioning informed by its own specialised Clinical Reference Group (CRG), while sexual health is now regarded as a component of public health which has been handed to local authorities. Early signs (as at November 2013) are that in some areas where the local authorities have a grasp of the health issues – in London the co-working between Lambeth, Southwark and Lewisham comes to mind – this may be working reasonably well, although there are concerns that some of the more conservative Authorities may take a less realistic view. For HIV though, moving to a national level brings some clear advantages, not least that patients should now be more confident of receiving much the same level of service wherever they live.
Nevertheless, whether services are commissioned locally or nationally, they are increasingly tendered out to many private suppliers rather than supplied by one NHS. Thus alongside the removal of skilled management we are seeing the fragmentation of a reasonably coherent thought-through service into separate components of a system, each of which is now potentially provided by a different commercial supplier. In other words, instead of spending time on an intelligent reappraisal of healthcare in the early 21st century and ensuring that the NHS remains a national provider, the present government appears to have switched the NHS from a single service to a branded franchise called ‘NHS’ whose services can be provided by any qualified provider.
An example of this, and of the government’s ideological position, is in the matter of hospital outpatient pharmacies. Medicines dispensed through such pharmacies attract VAT which the hospital has to include in its costs, while medicines that are dispensed by high-street pharmacies or which are home-delivered are exempt from VAT. Rather than government ending this anomaly by removing the VAT, hospitals are encouraged to outsource to commercial suppliers. This can still be done on hospital premises, but now as a privatised activity via the NHS as a franchise. This has already happened at several major HIV clinics in London and elsewhere, with varying results and sometimes without patients – or clinicians – being consulted. This does have impact on patients of course, and I am aware of one patient who is now seriously weighing up the prospect of being ‘outed’ in an outpatient pharmacy against collecting the meds, knowing that not taking the meds is likely to have very serious health implications. The fact is that HIV is still seriously stigmatised, and keeping the fact of one’s diagnosis secret is, for some patients, the most important issue.
At a more local level in sexual health and HIV, we are hearing of contracts being put out to tender in such a way that existing services have to behave like commercial companies in order to survive. With increasingly significant healthcare services being ‘outsourced’ (or privatised – let’s not be timid here) to private companies, the ethos and the practice of public accountability is replaced by an ethos and practice of ‘commercial sensitivity’ and ‘commercial confidentiality’.
Fragmentation of the health service into a health system of changeable components has some advantages for those services that are designated ‘specialised’ (HIV, for example) and an as yet unknown balance of advantages and disadvantages for more general services including sexual health. In HIV, patients are involved in advising commissioners via the four patients and carers representatives who are members of the HIV CRG; these four, of whom I am one, elicit community’s views and feed-back via the UK CAB (Community Advisory Board) website www.ukcab.net and the community forum at www.myhiv.org.uk. At local level the picture is highly variable. This is because a patient needs both time and an awareness of the system (including awareness of Clinical Commissioning Groups, Healthwatch, local councillors who are open to patients’ involvement etc). I know of a very few patients with HIV in Camden for example who have managed to become involved in these groups locally, but these are people who are already confident speakers, ‘out’ about their HIV, know how to engage with political structures and so on. The onus then, is for commissioners at this local level to reach out to patients and ensure that they are invited in to safe spaces where they can disclose their diagnosis in order to influence discussions of service commissioning and provision.
A report in the Journal of the Royal Society of Medicine in 2011 found that “in cost-effective terms, i.e. economic input versus clinical output, the USA healthcare system was one of the least cost-effective in reducing mortality rates whereas the UK was one of the most cost effective” (Guardian 2011). Despite this, we have had a top-down restructuring and fragmentation of a service that was known to be a high-performer. The impact on patients of this process is yet to be fully understood and it is clear is that many patients and staff have become confused by reforms “wrapped in the shroud of the 2012 Health and Social Care Act” (Guardian 2013). It is critical that over the coming months the voice of the patients and services users are sought and heard to so that we begin to get a sense of the real impact of these changes.