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    Perfect markets need choice. If providers collude in pricing, say because they aren’t that many of them, the consumer doesn’t get a choice, and often has to pay through the teeth to obtain the product.

    For products which are the same, for example a biological detergent, the choice comes from variation in ‘adding value’ such as perfume.

    A similar argument holds for paying to have your hernia done. The actual service of the actual operation is effectively the same due to constraints posed by the functional anatomy of the human body. But would you like fries with that?

    In the paperwork which surrounded the Health and Social Care Act (2012), there was the proposal that choice would lead to lead to improved quality in the healthcare market.

    Healthcare is not a market for a number of reasons.

    Prof Michael Sandel from Harvard has framed the complicated issues in a number of ways.

    In the Guardian, Decca Aitkenhead writes:

    “According to the logic of the market, the matter of whether these transactions are right or wrong is literally meaningless. They simply represent efficient arrangements, incentivising desirable behaviour and “improving social utility by making underpriced goods available to those most willing to pay for them”. To Sandel, however, the two important questions we should be asking in every instance are: Is it fair to buy and sell this activity or product? And does doing so degrade it? Almost invariably, his answers are no, and yes.”

    The evidence that competition in markets to do with the provision of healthcare drives up competition is weak. This was finally conceded by the previous CEO of NHS England – but there’s a change of hands at the helm in Simon Stevens, appointed by a Conservative-led government.

    That choice is so pervasive in neoliberal health policy is exemplified at the lengths to which people dismiss lack of choice.

    To advocate for choice at this precise moment would be utterly surreal, given for choice to operate the system needs reserve capacity. This is clearly not the case if the NHS England masterminds seek £20 billion austerity cuts.

    For example, if recent allegations – that the NHS received a shortfall of £8bn in funding for the NHS thus mandating it to make three times the volume of ‘efficiency savings’ it otherwise would have had to have made – are true, can it sensibly argued that austerity brings improved choice?

    It is hard to argue against the notion that poverty brings about decreased choice. Likewise, if you run out of money in your personal budget, in effect rationing at the n = 1 level, you will find it difficult to argue that your choice has improved.

    Similarly, if against the wishes of many CEOs of NHS Foundation Trusts, a cheerleader for the Government imposes a contract on junior doctors, against which 98% of junior doctors have been balloted to reject, can that really be choice?

    The imposition of the junior doctors’ contract is as desperate of course as the imposition of Academy status on schools. There is no evidence that this forced conversion drives up quality.

    Try another one – try being locked into repayment of a PFI loan for 30 years, a type of ‘corporate wonga’, where your repayments are at eyewatering unconscionable interest rates. Who benefits from this ‘choice’ apart from the PFI money lenders?

    Rather, there is quite a lot of evidence that previous UK governments have encouraged the conversion of a well funded national system over decades into a fragmented cesspit of autonomous units, increasingly being sold a pup by the private sector, with worsening performance despite staff working their butt off.

    Parents can’t get their children into schools nearby; and the class sizes are ginormous. And your local A&E is shut down as the current Government says it’s ‘unsustainable’ – i.e. does not wish to afford it.

    This is not choice, but an ultimate problem in the exercise of choice is that the ‘choice’ of government we have currently was done by a small proportion of the electorate. As ever then, the resultant choice is illusory, as different newsreaders take it in turns to read the script from their corporate masters.

     

     

    @dr_shibley

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    I went to an LCC event on resilience. The Council are encouraging people to create Resilience Plans for emergency situations like when it snows and no-one can get in and out of your street for days on end.

    Makes sense. We talked in groups about who is most vulnerable in these situations. Naturally I thought about the frail, multi-morbid elderly living alone. What happens if the District Nurse you rely on for your insulin injection can’t get to you? Or if the carer who gets you up and toilets you can’t get through the snow?

    I did ask if the County Council were working with Health to ensure that Resilience Planning is part of Advanced Care Planning. Of course they are. Strategically….

    But without any kind of integrated record keeping of course.

    The Council know, apparently, who is vulnerable in our community (….do I believe them?) but can’t share that information with community leaders until there is a crisis.

    Why-o-why-o-why….

    …couldn’t a persons Resilience Plan be part of their medical Advanced Care Plan and be attached to a shareable health and social care record?

    Look at what they are doing in Ireland using the e-portal “Patients Know Best”.

    Answer:-
    Too many egos, too many silos and too many managers creating pretty websites and complex information sharing protocols that protect health and social data from the one person who has a right to share it:
    You.

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    These myths were presented by Dr Nigel Speight to the SHA meeting in Stockton on 22nd November 2015

    Der Speightm Debbie Abrahams and Louise Baldock

    • “We can’t afford the NHS”

    Yes we can!

    This myth is based on the claim that the increasing age of the population is posing an insuperable burden on the NHS. The unstated implication is that we should withdraw medical care from  the poorer members of our ageing population and allow them to die off, while the richer ones survive with private health care!

    Since this is hopefully out of the question, we need to consider the best way to meet the health needs of our whole population.

    The fact is that the NHS is currently one of the most cost-effective health services in the world, coming top out of 17 countries surveyed by the Commonwealth Fund. The USA’s health care system came bottom for cost-effectiveness. The English NHS achieves its high efficacy while only receiving 8% of GDP. France spends 12% of its GDP, Germany 14% and the USA 18%. The main reason these other countries fare so badly in comparison is that they have to spend so much money on administration of insurance-based systems.

    • “Health Tourism is bankrupting the System”

    Not true! The government spreads this myth as a means of distracting us from the real cuts of £20bn that the NHS is facing. In reality, the best estimate of the cost of treating foreign nationals in the NHS is less than 0.2% of the NHS budget.

    • “The Government has no intention of privatising the NHS”

    Oh yes it has! All the machinery is in place for a steady privatisation of the whole of the NHS. One tenth of surgeries are already privately owned, and large contracts have already been given to companies like Serco and Virgin. In the last 10 months, over 70% of contracts signed for NHS services have gone to private providers. Admittedly the majority of services are still provided by the NHS, but at this rate the NHS will be fully privatised within the next 3-5 years unless we can stop the process.

    • “Private companies deliver better and cheaper care than the NHS”

    There is not a scrap of evidence to support this assertion, and plenty of evidence to the contrary. Private companies have to make a profit for their shareholders, and they do this by cutting services once they have obtained the contract. A prime example is Serco’s contract to provide emergency care in Cornwall. They failed to provide enough receptionists or doctors, and on one occasion there was only one doctor on call to deal with the whole of Cornwall. Serco was subsequently found guilty of falsifying its data to disguise these failings.

    • “The Government’s reforms are aimed at cutting bureaucracy”

    On the contrary, simply implementing the “reforms” has cost an enormous amount of bureaucratic effort. One best-guess estimate is that this cost is approaching £3billion. Once in place, there has been a major expansion of bureaucracy involved in setting up new machinery for the tendering process. Before successive governments started the privatisation process, NHS administrative costs were close to 6% of the total NHS budget, and this was why the NHS was so cost-effective. These costs have subsequently spiralled. The House of Commons Health Select Committee found that simply administering the “purchaser-provider split” ( during the days of New Labour) cost c 14% of NHS funds, and the explosion of administrative activity since the bill was passed must have put the total closer to 20-25%. More money spent on administration inevitably means less money to spend on patient care. This has already resulted in hospital closures, cuts in nursing staff and bed cuts.

    • “The reforms will give patients more choice”.

    This is simply untrue. Previously a patient or his/her GP could request a referral to a named specialist of the patient’s choice virtually anywhere in the country. This is now completely impossible as referrals have to follow contracts with local providers. Referrals are now processed through management centres where they are either rejected (one in eight of referrals are rejected currently) or redirected, by people often with no medical knowledge or training. A GP cannot even refer a patient directly to a named consultant in the local hospital.

    • “The reforms put GPs in charge”

    No they don’t!  Initially, England’s GP’s were taken in by this promise. Gradually it dawned on them that they were being given responsibility without power, and the College of General Practitioners and the British Medical Association came out in strong opposition to the NHS Bill. Far from being in charge, polls show that 73% of GPs now feel they have been “set up” to take the blame for rationing health care.

    • “The reforms give power to local people”

    Again this is simply untrue. The example of Jeremy Hunt’s attempt to  close Lewisham hospital is a prime example. He attempted to do this against the full weight of local public opinion. When the High Court ruled against him, saying that what he did was illegal, he simply changed the law so that next time he will be able to get away with it.

    After all these Myths, let us not forget one barefaced lie. Before the 2010 election, David Cameron promised the country that “there will be no major re-organisation of the NHS”. In fact, the re-organisation that is taking place is so “major” that, according to Sir David Nicholson, head of NHS England, “it can be seen from outer space”. It must have been secretly planned to take place all along. While the public are well aware that politicians often tell lies, this was a major act of political deceipt of which the public should repeatedly be reminded.

    CONCLUSION

     The English NHS is under attack as never before. The media have failed in their duty to inform the public, many of whom do not realise how serious the situation is. When this government came to power the NHS had its highest ever popularity ratings with the public. Since then the government has pursued its own privatisation agenda at every opportunity, and has attempted to deflect criticism on to doctors and nurses by a continual campaign of aggressive negative briefing.

    We appeal to you to do all you can to hold this government to account and to defend the NHS before it is too late.

    (This information sheet is an abridged version (by Dr Nigel Speight) of a paper by Dr Jacky Davies, co-chair of the NHS Consultants Association, from the March 2014 Newsletter of the NHSCA)

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    Post Winterbourne View accountability and scrutiny will become even more important.

    I have attached links to a short article and a longer Case Study I’ve written looking at how resident scrutiny panels can drive improvement in housing and care for residents.

    This shows how a housing association providing housing and care services worked with their Resident Scrutiny Panel to look at care and housing services – new for housing! But it is new for care services too?

    Phil Morgan

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    Labour Health Policy Consultation

    Response from Dr Kathy Teale and Councillor David Ellison, Members of SHA and Didsbury West Labour Party  Manchester Withington CLP

    Introduction

    Many studies have shown that the NHS is an extremely cost-effective health care system.   A recent Commonwealth Fund report from 2010 repeated this finding. This report compared health care systems in 6 developed countries including the UK, the US, Canadaand Germany.  They looked at 5 areas – Quality of care, Access, Efficiency,   Equity and population life expectancy.  The UK ranked 2nd overall, with a much lower cost per capita – $2454, as opposed to $US 7290. However it did badly on “long healthy lives” (many of the determinants of which are determined by social conditions and not a reflection the quality of health care) and “patient centred” care, (which reflects how convenient and pleasant the service is for patients, rather than looking at outcomes).

    The NHS is therefore not a “broken” system – and it’s high cost-effectiveness may be particularly relevant at a time of restricted government budgets.  However, there are elements which we need to improve, especially as the population ages and comorbidities such as obesity increase.  In particular, it needs to be more “patient-centred”.

    We currently, under the purchaser-provider split, have a system which has discouraged integration between primary and secondary care, and where rehabilitation services, community care and social care have been grossly and systematically under-resourced.  We have also inherited a network of acute hospitals which has not changed for the last 60 years, despite major changes in population distribution and needs.   Yet the recently-passed HSCA does nothing to address these problems, and in fact will lead to an increasingly fragmented and disparate service with differences in provision and access between regions becoming increasingly common.

    This paper looks at some of the ways we can improve on the current provision of health care in theUK– both in acute services and long term and social care.

    Response to Questions;

    1/ an integrated approach to Health and Social Care

    • Is whole person care the correct approach to healthcare in the 21st century?

    A    Yes, the consensus view is that that this is the way forward

    • How can whole person care be funded so that it becomes free at the point of use?

    A. Healthcare should be provided by the Public sector. The celebration of the humanity of the NHS was a key part of the Olympic Celebrations by Danny Boyle. Evidence from theUSAdemonstrates that costs of private provision are substantially higher due to administration, bureaucracy costs, excess provision to the wealthy, and still with inadequate provision to the poor and non-insured.  An extended state-backed insurance-based system for social care may need to be provided in theUKto fund care needs of the elderly in the future as costs of care and the number of elderly increases. Planning for this whole life care should start now.

    The principal of free Health services at the point of use must be maintained however. Up-front payments, as inFrance, disadvantage poorer patients and discourage access from the very patients that often most need to access services quickly.

    More emphasis should be placed on access to primary care, which evidence shows has become more restricted since the current government came into power. Easy and prompt access to primary care is essential for early diagnosis and reducing health inequalities especially in hard to reach groups.

    “Empowering primary acre is associated with better health outcomes and lower costs – primary care has been outmanoeuvred by a health industry intent on opening access to lucrative down stream services and resources “Brian Kiepper, US health commentator

    • How can we ensure a better experience of patient care?

    A    Ensure that service providers are responsive to patient requirements. That a complaints service continually responds to patients and that a system of continuous improvement is in place. Ensure that there is strong scrutiny of NHS services with an independent patient watchdog put in place.

    The emphasis on patient choice should be changed so that patients have choice over the treatment they have, and at which hospital, clinic, or care home. However, the expectation should be that the patient’s local provider is of high quality and most patients would want to go there

    • How can we better extend services to hard to reach families and communities?
    1. Make sure that people know about the services that are available, through public health promotion, use of community outreach services.  There must be a concerted drive to reduce health inequalities and differences in life expectancy that only began to close with injection of resources into the NHS by the last Labour government. Evidence is growing now that health inequalities are growing again.  Access must not be affected by wealth,  education, comorbidities, age , gender, or race .
    • How the health and social care service should be funded in the future?

    A     The most equitable way of providing healthcare is by population risk pooling i.e. funded by everyone through general taxation or state insurance system . Co-payment systems reduce access to those with low incomes and introduce a two tier service, reducing the impetus for service improvements for those on the lower tier. This will only serve to widen inequalities . Even a small charge to see the GP when trialled inWales, resulted in later presentation of morbidities .  Specific insurance systems introduce a smaller risk pool with the danger of cherrypicking .

    • How can services be made more accountable to patients , public and staff ?

    A   There needs to be democratic accountability for the Health service at the highest level to Parliament .  Democratic accountability at local level should be increased by strengthening the role of local authorities in the provision of public health and social care services . Authorities should have a role in driving down health inequalities . However to do this they will need sufficient resources.  The poorest parts of theUK, which are the areas of shortest life expectancy, have the highest health needs and therefore need appropriately increased funding to improve the health outcomes for these vulnerable populations.

    • How can we learn from the Dilnot Commissions about how we fund social care ?

    A   The Dilnot Commissions recommendations for social care need to be looked at. A state backed insurance system to meet the needs of an ageing population will be the fairest way of providing the increasing levels of social care required by a growing elderly population in the future .

    2/ Principles  of Health and Social Care

    • What would you list as the key principles for any health and social care service ?

    A  Health services should be funded  by the public sector through general taxation or insurance to provide general healthcare services for all citizens free at the point of use .

    There should be equality of access for all citizens.  However, in order to reduce health inequalities the service should positively seek out those in need of care and meet those needs.

    Treatments available should be evidence based and in accordance with best practice . Variability and idiosyncratic practice must be discouraged .

    Information about services and outcomes should be freely available to patients . There should be a continual process of public health education and promotion

    Healthcare provision should be planned and commissioned to ensure the changing health needs of the population are matched in line with advances in medical science and improved methods of care . Public Health services based on the needs of the population should drive change and improvement .

    Healthcare provision should be adequately funded and commissioned at a local level where possible to ensure that is  responsive to the needs of the population .

    Patients should have choice over the type of treatment they receive and where they receive it from . However it should be on the basis that the standards of service throughout  Health service are consistently high . Choice of provider alone does not drive up standards, as patients are unable to choose on the basis of any criteria reliably linked to quality of outcome.

    • How can we put the patient back at the heart of the NHS and re introduce cooperation rather than a market free for all ?

    A   What do we mean by patient at the heart of the NHS ?

    Patient centred – The commonwealth fund definition is “ care delivered with patient preference and need in mind, including good communication . continuity , feedback and engagement “  This does not involve outcomes, which are assumed.

    1/ Ease of access to primary care provision – 80% of healthcare contact is through primary care . Good communication , continuity of provider and emergency care when required are vital

    2/ Involve patients in decision making about their treatment

    3/ Emphasis on whole person care –not fragmented across different services especially for elderly and multiple co-morbidities

    4/ Abolish private sector competition which segments service and hives off profitable parts and introduces perverse incentives . Providers should not be “for profit “ , free flow of information and patient details between providers is vital . All centres to publish data, not just NHS providers.

    5/ Rigorous audit and monitoring against quality targets e.g. fractured NOF care – with payment attached to providers for fulfilment of targets .

    6/ rationalize secondary care services e.g. specialist care in a few big centres , less specialist in other and more local hospitals , balanced against access requirements

    7/ Conflict between efficiency and patient experience – e.g. theatre list efficiency – some patients have to wait and risk cancellation in high utilisation systems . Therefore improving patient experience may lead to greater costs

    8/ Improved communications once being treated , including with relatives

    9/ In turn patients have a duty to understand how the NHS works and is funded. Some patients are largely ignorant at the moment and don’t appreciate the service they receive. There is a social contract at the heart of the NHS

    3/ Tackling Health inequalities

    • How do you think the NHS can best work to reduce Health inequalities?

    A the Marmot report in 2010 identified 6 objectives to reduce Health inequality

    1/ Give every child the best starts in life.

    2/ Enable all children to maximise capabilities and have control over their lives

    3/Create fair employment for all

    4/Ensure Healthy standard of living for all

    5/ Create and develop healthy and sustainable places and communities

    6/ Strengthen the role of ill health prevention

    The NHS alone cannot solve the health inequalities in society alone; it is only part of the answer. Improving health prevention and promotion services will assist in driving social change to improve health. , tackling obesity, smoking drinking, drug taking and improving diets etc.

    One of the key ways of preventing premature morbity is ensuring that early intervention is available.  This will over time reduce costs as it reduces late presentations, improves care and reduces some of the need for expensive secondary care services

    • Which services need to work together to tackle health inequalities?

    A  Across each region of the country the NHS needs to work together to provide an integrated service to patients;

    1/    There needs to be an overall planning function  Matching the health needs of the population at a national , regional and local level with health care resources

    2/    Integration between primary and secondary care to create a seamless care pathway for patients.  The vertical integration of services can take places through a range of service providers in different areas, dependent on local circumstances

    3/ The Acute care services need to be arranged to continually drive up standards and bring the latest advances in medical science to the population. The model of Hub and spoke services is beginning to drive provision of specialist services.

    4/ Changes in future demographics especially the increasing numbers of elderly and  long term conditions need to be reviewed and planned . The balance between primary and secondary care needs to ensure the best use of resources.

    5/  If  rehabilitation, elderly and long term care is to move a hospital setting to the community, there needs to be massive investment in community care services to enable provision of 24/7 care, with the ability to provide intensive nursing care in the home .

    6/ There needs to be integration with social care functions currently proved by local authorities. Some of the most needy families are in receipt of large amounts of intervention and this needs to be brought together in a co-ordinated way

     

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    Promoting patient choice at the end of life

     Labour’s health and care policy recognises that “users, their families and the public are at the heart of local health and care services”. To that end the policy stresses the importance of respecting a person’s choice of care setting at the end of life, with the ambition of making it possible for people to die at home surrounded by their family.

    This is a welcome commitment; but it is important to recognise that personal control at the end of life extends beyond choice of care setting and includes choice and control over how and when we die.

    Who has the Right to Choose?

     Historically policy on end-of-life care and decision making has developed in a piecemeal way. This is partly because of the ethical dimension. On some issues Government can set out policy (like dying at home) but others are issues of conscience and are for Parliament to decide (like assisted dying for the terminally ill). At times Government can get caught between the two (like the right to refuse life-sustaining treatment and the debate around the Liverpool Care Pathway).

     A failure to look holistically at patient choice at the end of life means that some significant issues remain unresolved. End-of-life care has been included as a priority in the most recent NHS Mandate, but NHS England has stated that it will not be refreshing the End of Life Care Strategy, instead publishing a set of actions and ambitions – leading the National Council for Palliative Care to express concerns that momentum will be lost in delivering improved access to end-of-life care. On the ground the Liverpool Care Pathway, following an independent review, is being phased out, but with no firm replacement in terms of national guidelines for healthcare professionals. Concerns have also been raised about the lack of a national policy on do not attempt resuscitation (DNAR) orders, and more widely a failure to promote patients’ existing rights through Advance Decisions and Lasting Powers of Attorney to refuse medical treatment in advance of a loss of capacity. And of course there is the ongoing public and parliamentary debate on assisted dying for the terminally ill, with a Private Members’ Bill tabled by Lord Falconer set to be debated shortly in the House of Lords.

    Medical advances mean that thankfully many of us will now live longer, but also that many more of us will face prolonged suffering at the end of life. Patients who now rightly expect their wishes and autonomy to be respected in all other areas of healthcare will no longer accept limited choice at the end of life and/or having to watch loved ones suffer against their wishes. Acknowledging the ethical dimension in end-of-life care, there is a real need for leadership from a future Labour Government in creating the framework and making parliamentary time available to consider these issues in the round.

    In short, the Labour Manifesto should provide a broader commitment to promoting patient choice at the end of life. Specifically, we hope that a future Labour Government would, in addition to promoting choice over care setting at the end of life, ensure:

    Access to good quality end-of-life care across all care settings including hospitals and care homes.

    • Sufficient training in end-of-life care for relevant healthcare professionals, including good communication with patients, and clear guidance on removing or withholding life-sustaining treatment.
    • Promotion of advance care planning, and the ability for patients to set out through Advance Decisions and Lasting Powers of Attorney their treatment wishes in advance of a loss of capacity.
    • Sufficient parliamentary time to debate the issue of assisted dying for terminally ill people.
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    The need to defend the NHS and its core principles is so important that it is sometimes difficult to have conversations on the left about ways people can direct their own health care alongside supportive professionals. Ideas that stray from the need for more cash and more staff (both of which I think are needed) are often vehemently dismissed as at best naïve (dupes of the right, inadvertently opening doors to privatisation) or at worst evil (deliberately seeking to smash collectivism). It sometimes seems that to dismiss any innovation, all that is needed is to use one of the dog whistle words – consumer, market, private, top up, voucher etc. It feels like everything has to be presented as very simple – good or bad, right or wrong, market or state. This is not in the interests of people who use the NHS, and especially people with long term conditions. They need the left to be focussing strongly on how to maintain the core principles and elements of the NHS in ways which increasingly accept people as experts in themselves.

    We sometimes seem to need a dilemma-free understanding of public services, where the interests of people who run them are seen as identical to those who use them. We can agree on the dangers of the uncaring market, but little attention is paid to the limitations that a bureaucratic state can place on users of public services.  We seem to want to put our head in the sand and ignore, for example the kind of findings reported recently by the Institute for Public Policy Research:

    A 2010 Commonwealth Fund report compared seven developed-world healthcare systems and ranked the NHS top for effective care and efficiency, but bottom for patient centred care (Davis et al 2010). While this may matter less to those seeking one-off treatment for an acute health issue, it has a significant impact on people who have lifelong conditions that cannot be cured but only managed”.

    My gentle plea is for us to have a better debate on the left, based on the need to focus first on the interests of people who use the health service and our understanding that power matters and needs to be shared. The Spirit of ’45 made me proud of our country – watching the NHS launched by Bevan at the hospital where my youngest was born. My parents were the first generation to benefit from the NHS and in later years were also employed by it – mum as a pharmacy stores manager and dad as a driver. I was also proud when my wife became a district nurse.

    Personal Health Budgets

    Practical examples showing how the NHS can work together with people with personal health budgets and their families

    But in the final months of my mum’s life last year, our family saw both the best of the NHS and things that need to change – like a microcosm of the national strategic challenge. We saw fantastic GP support, great specialist cancer services and unbelievably supportive hospice care. We also saw insufficient community support (not enough district nursing and too few hours of home support via continuing health care). But this was not just an issue of insufficient resources in the wrong places, there were also problems related to a lack of shared decision making. My mum felt too powerless in the face of decisions made by systems that professionals felt they had to go along with and managers enacted.

    Mum’s ability to control her support was first challenged when she qualified for fast track continuing health care at home. The professionals involved directly contracted with an agency (unknown to us) which phoned to say they were coming round that night. This despite mum (with family help) having already chosen an agency, met the staff and designed how she would be supported (who and how many people, when they would come, what they would do). Though this agency cost no more than the contracted one my mum’s decision to choose and direct her own care was seen as strange and it took quite a lot of negotiation to get agreement to keep the agency she selected.

    A bigger issue arose as mum’s condition worsened. She had always been very clear that her worst nightmare was to die in a nursing home. Her view was that nursing homes were too institutional in how they operate and she wanted to be at home amongst family, friends and the familiar – be able to decide who came into her house, when and how they should support her.  However, after she was admitted to the local hospice for some symptom relief, a move to a nursing home is exactly what would have happened if me and my sister hadn’t intervened forcefully. The senior consultant and other professionals felt it was best – partly given what they saw as the risks of her being at home but more importantly because this was what always happened. The PCT clearly had contracts with nursing homes and if you needed something different from three, one hour visits a day at home and a couple of nights, that is where you went. There was an attitude of “what is your mum’s problem with nursing homes” rather than an acceptance that she just didn’t want to go to one for her last days. It felt like most of the professionals were a little trapped in a “this is how we do things and how it has to be” culture. To their credit, after a lot of discussion the professional group listened to our ideas and agreed to a plan to get mum home and avoid nursing home. This was when we hit the final hurdle – the assessment disappeared into the vacuum of the PCT and never came out. Three weeks later mum died in the hospice.

    I am not for a moment saying my mum’s care was poor – in the main it wasn’t. I’m not saying the professionals weren’t skilled and caring – they were. What I am saying is that she and those closest to her needed to be heard and responded to much more and that the problems with how the system worked weren’t just about the quantum of resource available.

    There have been positive developments in recent years which give some people more of a say in their health care – self-management and shared decision making approaches . They have far to go before they are standard practice but are important elements of a continuum through which those who commission and provide health care can share decisions or “co-produce” (in the current jargon) with people using public services. For some, however, they won’t be enough. That is why we need to have, at the end of the continuum and for some people who choose it, the right to direct the resources for your care via personal health budgets.

    If my mum had been able to say “I want the resources available to me to be used in ways that I decide will work for me, though I am happy to hear your advice about managing risk and accept skilled professional support”, I am pretty confident she would have died where she wanted, at home. I have now met many people who love the NHS and would go to the barricades to defend its key principles who have found that using personal health budgets has allowed them or their loved ones to make their health support work for them when it wasn’t working before.

    There are many arguments and understandable concerns about any system that monetarises care. Some of these are practical and technical – “how do you do this stuff?” Some of them are ideological and political – “is this opening the door to top-ups and insurance?”.  All of these deserve debate – there are few powerful innovations without risks and potential downsides. It will be vital that personal health budgets are done well, that there are boundaries around the parts of the NHS they apply to, that they are not used as a trojan horse for the “selling off” of the NHS. But people on the left should engage in these debates seriously. We should consider how real and enduring problems in how people with mental health needs and other long term conditions are currently served might be positively impacted upon by personal health budgets.

    Currently there is too much angry polemic, sometimes almost contempt for those (including “patients”) who are advocating for personal health budgets. Their detailed stories of how personal budgets have allowed them to have greater control over their care and improve outcomes are too easily dismissed as anecdotes rather than “data with soul”.  When people do look at research evidence they seem to be looking for cold fusion – a perfect, dilemma-free innovation  – or they point to the things that the research hasn’t yet found out as the key reasons PHBs are a bad idea. It is not helpful to dismiss a three-year independent academic trial with a control group as worthless evidence as some have done. It sheds heat not light to use the somewhat flawed experiment in the Netherlands – where personal budgets were so popular that the system buckled – as proof that PHBs are a bad idea. It is certainly a strange argument on the left to say in effect “too many people wanted to control their care – we musn’t allow that to happen here”. We might as well have said in 1948 “too many people are getting their eyes checked and teeth fixed – stop it now!”

    I want to see an NHS that is properly funded and offers great health care. I also want to see an NHS that increasingly acknowledges that people and families are experts in themselves and should have a much stronger say over their care if they want that. Money on its own won’t solve this. It is really instructive that many disabled people are very anxious about proposals to integrate health and social care within a health-led system. They fought in social care for the social model of disability (a battle far from won) and fear the return of the medical model into their support.  People like the idea of joined up support very much, but not the idea of integration being done to them via systems and practices they have no real influence over. Disabled people fought a decade’s long campaign for direct payments because they knew that however well intentioned, the interests of the system and the professionals staffing it are not simply identical to their own. They knew that in some cases they needed the power to be able to say “I know you think that is best for me and I respect your professional judgement but I also need to be heard and want the resources for my care spent in ways agreed with me”.

    Often people sympathetic to these arguments but wary of making resources directly available say “It’s true we need to be more person centred but we don’t need personal budgets for that, it’s about  culture change and using some of the new approaches and practices”. I hope that we can continue to make culture shifts and adopt new power-sharing methods.  At the end of the day though for some people to be heard and while we are waiting for these culture changes (its taking a while), some will want and should have the option to use personal budgets to direct the resources for their care. I respect that others on the left have different views but let’s talk about it. As Mrs Merton wouldn’t have said, “let’s have a slightly less heated debate.”

    (The views in this blog are my personal opinions and should not be taken to represent those of my employer)

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    Report on our seminar February 2013 chaired by

    • Jeremy Taylor Chief Executive, National Voices. Jeremy’s Manifesto for Patients:

    Patients are whole people, not just body parts.  They demand dignity, respect and compassion. They want services that actually join up around them, not just shared budgets.  Patients are citizens with rights.  Access to health is a human rights issue, and an equalities issue.   Citizens also have responsibilities.  They have a right to be heard, individually and collectively.

    We as patients are partners in our healthcare with our own expertise.  We expect proper conversations with clinicians. We need good information and IT systems.  Can politicians help to change doctors culture in this respect?

    Are patients customers?  Many are not happy with the terminology, but we don’t like poor customer service. We want service providers to care about our experience.  We don’t always want choice of provider, but some choices matter for individuals.

    Patients have families and carers – and communities.  Communities are of different kinds, and the NHS finds that difficult.

    Policy makers of all stripes have a tendency to glide over these different ways of really seeing the patient and to conceptualise in terms of organisations, funding etc.

    Andrew Craig asked Jeremy the question about what he thought the NHS Constitution means when it says “the NHS belongs to us all” and did he think that was part of the “moral owners” argument?  He agreed with that and said he would “sign up to ownership”.  He also said he “wants to see more of the population talking to the system, not just the system talking to the population”

    • Angela Coulter Director of Global Initiatives at the Foundation for Informed Medical Decision Making, Boston, and Senior Research Scientist at the Department of Public Health, University of Oxford.

    Angela welcomed Andy Burnhams’ speech. We are tired of constant reorganisation.  The priorities of Mental Health, Long Term Conditions, shifting care out of hospitals and letting people die at home are the right ones.  We want integration, and a recognition that choice and competition are not the same thing. Let’s see the abolition of markets, retain existing organisations and integrate budgets.  No more divide between primary and secondary care.

    But we need to go further. There are integrated budgets in Northern Ireland, and no market in Scotland, but there are still problems.  Abolishing markets is necessary but not sufficient.  We need culture and relationship change.   What will be the response to the Mid-Staffs report?  More of everything?  Be more radical.  Recognise the limits to medical care.  More intervention may not be beneficial.  Paternalism encourages dependency.  We need to recognise and encourage people as co-producers of their own health.  Professionals don’t always know best.  Patients have to manage their long term conditions – often more than one.  We may need help to do this, but that help must be provided in knowledge of our own circumstances.  Shared decision making is about sharing knowledge.  Often complex and scientific knowledge, but it can be made accessible with patient decision aids . We need personalised care planning.  Patients are often not told about the negative side of treatments. People have their own goals. They may not want the standard services.

    Would the policy of NHS as preferred provider interfere with this?  Any Qualified Provider may have a good side.

    In questions it was suggested AQP could be an important lever for change.

    Eric Watts:  simply stating “doctors are poor at communicating” is neither accurate nor constructive.

    Wendy Savage asked about No Decision Without Me.  Doctors now are less paternalist than when she trained in 1960s.  Shared Decision Making takes time.  What patients want is influenced by the rest of society.

    Angela’s reply is that Shared Decision making need not take more time, Information can be provided outside the consultation.

    Noted there is a lot of talk about public health, but its never really been a priority.

    It’s true that that some people don’t want to be involved, but most do.

    • Brian Fisher Chair of the Socialist Health Association and PPI lead for the NHS Alliance.

    and proud owner of one Long Term Condition.

    Why have we not been able to shift to seeing a person’s whole needs?  Why has there been so little shift towards prevention?  Liz and Angela worked together on the Future Patient Project 12 years ago, which addressed all the same issues.  But we still have three silos – physical, mental and social care. Cost shifting between different services is a major problem. But the fundamental problem is about culture, and its difficult to shift.

    It can be done.  Whittington Hospital tackled  Chronic Obstructive Pulmonary Disease with their Quit @ The Whit programme.  They understood the mental health and community based problems of their patients. They knew that they needed to understand the home circumstances of their patients.  And this approach reduces admissions and saves money.

    1. We need to look at workforce training and education, and how teams operate in hospitals
    2. We need to work on information and knowledge for patients. Traditionally information has been hoarded because knowledge is power. Patients need much more information
    3. Local Healthwatch seems unlikely to be up and running by 1st April as planned.  National Healthwatch simply doesn’t have the power and authority of the three big players in the NHS – the Commissioning Board, the Care Quality Commission and Monitor.
    4. Outcomes should be jointly determined by patients and professionals
    5. One system with one budget would help to join care together.

    Labour Party needs to co-produce a workable policy with patients!

    Discussion

    Sally pointed out that the local Healthwatch regulations, especially the gagging clause, were being debated in Parliament shortly, and Lord Phil Hunt was praying against them.

    Anne-Marie Rafferty: Patients need to be involved in all sorts of health governance.  The NHS constitution does not provide any legal entitlement.

    Jane Salvage: How will we respond to the Francis Report. Will we take an asset or a deficit approach?  If patients in Stafford had been actively engaged the outcomes might have been different.

    Liz: Francis may call for more regulation – of Health Care Assistants and managers.  IT may enable patients to tell their story.  Patient Opinion enables them to deliver detailed feedback about services in near real time.  I used it myself when I fell downstairs and needed treatment (Sally – in those shoes?). He may propose a duty of candour. Would that help?   If the only reaction is more regulation then all this is still somebody else’s problem.  When will Jeremy be as powerful as the 3 NHS regulators?  What we now about power is that it isn’t given away.  Patients have to seize it.

    Jeremy: We lack a language to talk about community

    Angela:  Patient participation changes the way clinicians work.  Primary care needs to be more proactive.

    Brain: Shared decision making can be oppressive

    Stephanie Clark: Patient Participation Groups are seen as a burden by most GPs

    Eric Watts: There is now much more emphasis on communication skills for clinicians.  But not all patients want choice or involvement.  Some say “What would you do doctor?”  It takes two to tango.

    Gary Bassett: Can we have real dialogue. For example what happened in Lewisham

    John Barlow: GPs are private businesses. They don’t want to be accountable to Patient Participation Groups

    Jeremy: The emphasis on Patient Participation Groups is ill thought out.  They could be a link with the community.  Maybe National Voices could work together with NAPP on this.

    Angela: Doctors often underestimate the degree to which people want to be involved.

    Brian:  What about accountability?  In Scotland we have had public election to health boards. What role will councillors play in the new set-up?

    Mike Roberts:  referred to the work which had been done in this area a couple of decades ago in 3 areas, Stoke, Birmingham and Tower Hamlets (Teviot Estate Bromley by Bow) which was about looking at capacity building and tackling the social determinants of those communities which would have a positive effect on wellbeing and hence preventative work. That work led to the setting up of the social exclusion unit in the Department of the Environment and much has then stemmed from that work with Tony Gibson and Anne Power.

    Barry Silverman: What about Foundation Trust Governors? In most places they are prevented from engaging.  The model is broken.   Will personal health budgets be a force for change?

    Jeremy: We need both Electoral and Participatory accountability.

    Angela: I’m pessimistic about the idea of joint commissioning.  Budgets and structures don’t change culture.  Personal Health Budgets could be used a s a way of squeezing the money and introducing more private providers.  But the Whole System Demonstrator did show improved outcomes.

    Richard Bourne: The NHS should not be an empire separate from other public services.  We need something like the Foundation Trust model

    Natasha Posner:  Are Clinical Commissioning groups accountable?

    Angela: How do we change the culture?  We need to focus on health outcomes. That is what should be measured and reported on. Not Payment By Results

    Jeremy:  We don’t need more regulation.  We should focus on the three pillars of quality: Safety, Outcomes and Patient Experience

    Wendy: And lets get away from self-assessment and box ticking.  The CHC model was better – Healthwatch may be useless.

    More about Jeremy’s Patient Manifesto

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    Almost one in five NHS patients seen in secondary care now treated by private firms, after Labour’s ‘patient choice’ reforms led to an expansion in the independent healthcare market, a report by the Nuffield Trust and the Institute of Fiscal Studies concludes.  But as John Lister writes “These figures are evidence of private sector expansion but need to be treated with caution: they only relate to elective treatment – and in fact the study only looks in detail at three elective treatments (hip replacement, gall bladder removal & hernia), with a grand total Independent Sector Treatment Centre provision of 24,000 episodes between them.

    By contrast the NHS dealt with 9.8 million elective admissions and 5.2 million emergencies. ISTCs did 12,000 hip operations: the NHS handles 856,000 operations on “bones & joints” each year.

    0% of emergencies are seen by the private sector, and on none of the categories of elective treatment analysed do the figures go above 17%: gall bladder ops are just 6%.

    The percentage of outpatient activity in the private sector is even smaller: so to claim that 20% of NHS patients are “now treated by private firms” is just grossly inaccurate and misleading.

    All this use of private providers is expensive, wasteful and undermines the proper provision of a comprehensive health service. It is a terrible legacy from a Labour government that could have spent the money and the time to strengthen public sector provision and protecting it against the ravages of the Tories and their LibDem sidekicks.

    But let’s not allow the false, defeatist picture to be generated that suggests the NHS is already largely privatised. This does not help us defend what are still vital public services, few of which would be offered by private providers unless they could screw additional funding from government over and above the NHS tariff.

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    Giving NHS patients the right to choose where to be treated for free by any qualified healthcare provider, including private ones if they can meet NHS standards and costs, is one of the most potentially transformative policies of the Coalition Government. It will empower ordinary people to make the kinds of healthcare choices that, frankly, only the rich have been able to make thus far.

    While few would disagree with the progressive aspect of this, the competition between providers needed to deliver the choice patients want has been controversial. This controversy has largely been manufactured, however, by vested interests on the Left who do not want other providers undermining their political control of the NHS. The reaction from the hard Right has been similarly ideological, with calls to go much further towards open competition without reference to any actual evidence on what works for patients.

    The first thing to understand about competition in healthcare is that, like competition in all social markets, it has to be properly managed to be of real benefit to patients, rather than just creating budgetary efficiencies for the system.

    For example, studies show that open price competition in healthcare, where providers can bid to run services and negotiate their payment for doing so, leads to lower costs and greater efficiencies, including shorter waiting times for patients. While that sounds great, the downside is that price competition can also lead to lower quality care as providers undercut each other in a race to provide the cheapest possible. While that may be good for NHS bureaucrats, it clearly isn’t in the interests of patients.

    Thankfully then, this is not the central focus of competition in the current NHS reforms, which are primarily about patient services paid for at the NHS fixed-price tariff. Evidence both from home and abroad shows that competition at a fixed price, which most NHS care is moving onto, increases both efficiency and the quality of care patients receive. This is because providers have to compete on the basis of delivering as much benefit as possible for the fixed price paid.

    The right regulation around competition is therefore crucial. The London School of Economics last year published a review of the effects of the competition and private sector provision introduced by the previous Government. It showed that while NHS patients benefited as well as private providers, it had a negative financial effect on some NHS providers in the market. This was because private providers were allowed to take easy, high-volume types of work, like simple hip operations, leaving complex and more expensive cases to NHS providers. Private firms were also allowed to negotiate far higher payments than NHS providers, even when doing exactly the same work.

    It is important to note, however, that the expansion of private provision under the last Government was met positively on the ground. The Institute for Fiscal Studies very recently reported that, while the previous Government introduced private firms into the NHS, actively expanding private provision year-on-year since leaving office in 2010, patients were also actively choosing this option. It thus increased rapidly: by the time the present Government took office, one in five NHS hip operations was conducted by a private firm.

    The sensible conclusion to reach from all this is that while competition expands choice and can benefit the NHS, it must be carefully managed, directed towards the interest of patients not bureaucrats, and fair to all providers. And this is exactly the aim of the present reforms.

    Far from being the “market free-for-all” the more militant wings of the Left often claim, the competition elements of the reforms are designed to be targeted at patient benefit and closely managed to ensure that focus remains. Indeed, the specific problems mentioned above are explicitly outlawed in the Act which brings in the new reforms. The reason the Left lost credibility in the battle of ideas over NHS reform is precisely because their arguments relied far too much (and some still do) on pushing false caricatures. The reason the hard Right achieves no traction calling for more agressive competition is that the evidence doesn’t merit it.

    There are some perfectly legitimate concerns remaining, however. One has been the effect of competition on ‘service integration’ – i.e., the need for different bits of the NHS involved in a patient’s care to be joined up, co-operating with each other. The Office of Health Economics recently undertook a major study which addressed this, concluding: “Competition can help the integration of care and there is no evidence that competition hampers integration.” Services provided in competitive markets will in fact ordinarily converge around consumers’ demands for convenient, joined-up services, which is why so many retail services are offered in bundles made up of different providers. The real question people should be asking is how long it takes competition to deliver this. As a transition measure, further initial system-led integration schemes should be used until the choice market matures.

    Another area to focus on is local GP practices. As largely-independent enterprises, they’re effectively in competition anyway, but there is clearly more to do to make this market more open to patients’ choices. It is a scandal that the provision of decent information that ordinary patients can understand on the quality of GP services is so difficult to extract from the NHS establishment. This is due largely to fear of the huge variation in quality and outcomes it will expose to the general public. The job is, however, essential.

    A ‘competition panel’ set up by the previous Government published in 2010 a study showing the more competitive pressure GP practices faced – i.e., the easier it was for patients to find and choose local alternatives – the better quality the care patients received was. But this competitive pressure is currently very low. While people can easily look up the quality of local schools via official league tables, they still cannot find out something as important as which GP practices are good at managing diabetes or a child’s asthma. So few ‘shop around’ or switch providers. Better GP information should be an urgent priority and would lead to a transformation in care quality, as well as choice.

    Given the clear benefits to patients of properly managed competition, the most important job is to make it happen fairly, in an appropriately managed way, backed by better information for patients – and above all, quickly. The NHS is still stuffed with ideologues who oppose change on the basis of their own vested interests. We can only hope that Monitor, the Commissioning Board and all others overseeing the NHS changes will be alert to that and prepared to act against it as champions of patients, not the system.

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    A response to  Sean’s article on Competition and Choice in the NHS by Irwin Brown

    Let’s get the politics out of the way first.

    Whilst many of his points accord with the general consensus Sean Worth suggests the changes brought in by the Coalition actually fit with this position. He cannot defend the wasted billions on a top down reorganisation or the constant alienation of NHS staff and professionals.

    In contrast to the position of Andrew Lansley, Sean has to accept that any framing of competition within our NHS has to be in a “managed system” – which is Labour’s policy.  On the contrary the Coalition is adamant that managers have to be prevented from interfering with the market forces.

    The Coalition Bill was based entirely on the unproven and highly contested assumption that our NHS could be improved by making our healthcare into a regulated market with competition between providers from all sectors as the key driving force.  It was about opening up the NHS to private providers and ending the role of the NHS as the provider of services.

    It’s true that many concessions were made during the shambles and the pause; for example to try and rule out competition on price and to assert the value of integration (although secondary to competition), but the idea the eventual Act has support on the ground is simply laughable.  Even in its final confused and watered down final form it was opposed by almost everyone, including almost every Royal College and Patient Group; not just the unions. The government got its Act but it lost every argument.

    Back to choice and competition.

    There is a wide consensus that choice if framed in terms of giving patients greater involvement in their care is proven to be beneficial.  Shared decision making and community development are powerful ways of providing real choices but the obstacles to this form of choice are profound and have nothing to do with markets and competition. Changes in behaviour and the training of care professionals plus a genuine revolution in how patients are given access to information are all prerequisites to offering real choice; it’s not about economics.  We need choice to empower patients not choice as in shopping.

    Sean’s version of choice is choice between multiple providers all offering the same service at the same price and is of very limited value.  Markets do not work well for healthcare and economic theory explains why; almost every study in our NHS into the benefits of turning the NHS into some form of market show limited gains and high increased costs.  Those from both far left and far right agree it is not working; the left want to go back to publicly owned and publicly provided nirvana (as in some mythical golden age NHS of the late 60’s) and the right want regulation and system management removed and full price competition.

    But aside from extremes there is again a wide consensus that there are circumstances where use of completion can be valuable in securing better services or better value for money; but as even Sean has to accept this is within a managed system.  Private providers, chosen through proper procurement, may be necessary to provide services when the NHS is not able to offer the quality required, or when some genuine innovation not available within the NHS is offered – and this has always been the case.  But the NHS itself will always be the main provider of health services.

    At the micro level there have been a few studies which claim to show benefits from competition within the NHS which after all has been around for simple planned surgery for years.  These claims are refuted by more recent analysis and other studies have not found evidence of benefits.

    But even if some benefits were established there remain concerns about macro level effects.  If competition fuelled by patient choice results in services being shut down at some NHS providers (maybe your local hospital) then the knock on effects might be that NHS organisations fail and local services are lost – which is never popular.  Emergency care, where choice is less relevant, needs to be within a comprehensive stable system, good everywhere, not some botched up network of competing providers.

    The other macro effect is that most believe that greater integration is required bringing physical health, mental health and social care together and building pathways of care managed by a single provider or where various providers cooperate – and most believe (as does Sean apparently) that a system driven by competition makes this far harder.

    And finally the private/public competition/integration arguments are secondary.  The key problems facing our care system are about clinical behaviours and culture, about integration of care, about funding of social care and about better allocation of resources, about reducing unnecessary variations in outcomes and reducing inequalities – none of which are addressed through market economics.  The unnecessary destabilisation of the NHS and the parallel refusal to deal with key issues in social care have meant years of wasted money and effort.

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