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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26 Comments

  1. The reason you may have a problem with people on the left is that you actually fail to see what you yourself alluded to. Personal health budgets are a right-wing neo-liberal idea, designed to ration finance and care. This is the same as a version of coupons to pay for education, introducing and promoting market ideology into everyday life.

    What you and people like have bought into is the myth that we do not have the money to pay for all our needs, Ask yourself how we afford to pay for all the wars we have engaged in over the last forty years?

    This Banker will explain to you why you have got it all wrong and need to concentrate on meeting the needs of people and public services rather than how we can afford it, you might then realise what the left stand for.

    Mike Norman, chief economist at John Thomas Financial:

    Link: http://www.youtube.com/watch?v=4HJ54RRB7OU

    Mike Norman is not the only individual speaking in these terms and most thinking students are now questioning the neo-liberal economic dogma that universities are peddling to support the bankrupt philosophies of the last forty years,

    We can afford our health service it just needs a government committed to do it.

  2. @richardblogger says:

    Let me first say that I have a long term condition, which I have had for 40 years. I will die with this condition, and will probably die of it. One advantage of having a long term condition for 40 years (if you can call it an advantage) is that I have used the NHS regularly for all of those 40 years and I have seen how the service has evolved (and seen what has worked and what hasn’t worked, and recognise when a scheme that hasn’t worked is being tried again under a new name). I am also “on the left” which means that my focus is on patients and not on the commercial opportunities that those patients represent in the gradually privatised NHS. I think, from my experience, my opinions about my care should be received as coming from someone who has a considerable amount of experience.

    “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”

    Yup, I do, but with no personal commercial interests: I volunteer many hours a week to the NHS for which I do not receive a penny. My comments do not come from someone who works for a company which will benefit from any NHS policy since my occupation has no connection at all with healthcare. I also talk to patients in GP surgeries and hospital waiting rooms – it is surprising how much you can find out about a service by simply talking to people waiting to receive it, I do this to get a feel for what ordinary people – not policy makers – want.

    “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.”

    Here I start to wonder if you have used the NHS much. Let me repeat, my long term condition is one which I have 8,700 hours a year, yet I only see a clinician for maybe one of those hours each year. This has been the case for the 40 years I have had this condition, and I have survived 40 years, so I must have been doing something right. Thus, I think it is safe to conclude that self-management of my condition has been important for 40 years. (OK, I admit, when I was in my early 20s I did stray – I wanted to be like my friends and so I paid little attention to my condition for a couple of years, but luckily one of the one-hour-a-year clinicians soon found out what was happening.)

    The NHS care I got in the 80s and 90s were very much data driven, the doctor saw the figures on a piece of paper, rather than the patient in front of him/her. As a result, I was given orders about how *I* should treat my condition, and any comments from me that the suggestions would not work were usually dismissed. That largely didn’t matter because it was me who was treating my condition for the rest of the 8,700 hours that year, and I treated it in a way that best suited me. I am not unusual. Everyone with a long term condition will be managing their condition. This is not a new development. Indeed, the treatment of my condition was far more involved in the 70s because I didn’t have the benefits of modern drugs and devices which have made my treatment much easier.

    This data-driven “doctor knows best” approach changed about 10 years ago. Seemingly out of the blue, the doctor whose consulting room I had entered asked me “how well do you feel?”. No doctor had asked me that before. We then had a conversation when not a single figure was mentioned. A huge improvement – the doctor was treating me, not the pathology. Now that is common, the figures are peripheral, it is how I am feeling that is important. A culture change. And what’s more, I didn’t have to use payment to make that change happen.

    “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.”

    No, you have not read the diktat from NHS England. Yes, it will initially be people on Continuing Healthcare from next October (and there are reasons for this, as I will explain below), but NHS England have also said that all people with long term conditions will be offered them. It is NOT the case of “some people”., in a couple of years I will be offered a PHB.

    “It is not helpful to dismiss a three-year independent academic trial with a control group as worthless evidence as some have done”

    You are right, it is not helpful to dismiss the Forderer paper. It is also not helpful to cite the Forderer paper as some “proof” that PHBs are a good idea. In fact, the paper says that there is little evidence that PHBs achieve much.

    The report says PHBs “did not appear to have an impact on health status per se”, and “No significant effects were found with regard to two clinical measures (HbA1C and lung-function tests, used where relevant) and there was no significant difference in mortality rates between the groups.”, further “Consistent with these results, the study did not find that personal health budgets had a significant effect on EQ-5D compared to the control group.”

    What this says is that there is no clinical reason for offering PHBs. Just pause here and think about that for a bit. No clinical reason.

    I am involved as a patient in a CCG patient group and the message I am getting back from the CCG (who have no choice – they have to implement PHBs) is that PHBs are good for patients. The Forderer paper says that they offer no clinical outcomes benefits. The way that the Forderer paper is being spun as a “proving” that PHBs benefit patients reflects how personal budgets were introduced in social care where people were told that they were the best thing ever, yet now we are seeing social care personal budgets being cut, and horrible depersonalising schemes like pre-payment cards being used.

    The Forderer study also looked at the cost of patients and found that inpatient costs were lower for patients on PHBs but the “direct” costs were higher, which lead to the statement that “The difference in direct and indirect total costs between personal health budget and control groups after accounting for baseline differences were not statistically significant.” In other words, there are no cost advantages either way.

    It is now starting to look like PHBs are not really worth the effort, isn’t it?

    There was one area where the Forderer study showed an improvement from PHBs but to do this they had to separate the test group into two: where the patients had low budgets and those with much larger budgets. Once this was done the study found: “Separating personal health budgets into high-value (i.e. a budget of more than £1,000 per year) and low-value, it was the former that showed a significant positive impact on care-related quality of life (ASCOT) and psychological well-being (GHQ-12). High-value budgets were more likely for people with greater levels of need or where sites opted to be more inclusive about what budgets could cover.”

    So what this says is that people on large budgets (like CHC patients) are more likely to *think* they are benefiting from PHBs. Not a bad thing per se, but note that there are *no* clinical benefits.

    So what are the problems? Well PHBs have to be paid for within the existing budget and the patient will be restricted on the items they can buy (clearly buying a bottle of whiskey is out!). In effect, patients will be given a list of services they can buy. The CCG will have control over what the patient can spend the money on, and there will be frequent reviews – not clinical reviews, but reviews about whether the patient is spending the money correctly. When I questioned my CCG about this, pointing out that someone on CHC is hardly in a fit state to go shopping for cost-effective healthcare, I was told – almost as an after thought – that a local charity would manage PHBs for patients. It was as if the scales had fallen from my eyes. PHBs are not about *patients* purchasing healthcare, they are about third parties – charities, CICs or for-profit companies – purchasing the healthcare. This is not personalisation, it is outsourcing commissioning. Since the patient would be required to spend the money responsibly and in a cost effective way, the use of a budget management organisation will not be optional.

    And then it got worse. As an example a commissioner told me that a patient with chronic pain could – for example – purchase an acupuncture session. I pointed out that the CCG did not pay for acupuncture, so this would mean a two tier NHS with some treatments only available to people on PHBs. The commissioner then corrected his example saying that PHBs could only be used to pay for treatments that the CCG already commissions. At that point it was clear that there was little “personal” about what was being offered.

    “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.”

    Au contraire! I have been told by my CCG that the Netherlands experiment *proved* that PHBs are good! The Netherlands had social insurance, which was then moved to a competitive insurance model that has hardly been a success. At this time PHBs were introduced, so it is not surprising they were popular when there were so many other unpopular changes going on. Also, the PHBs in the Netherlands were for home care and are more like our social care personal budgets than NHS personal healthcare budgets.

    I really do want personalisation, but handing me cash to buy my care is not the way to do it. At no point in the 40 years of my long term condition has there been a situation when me purchasing the care would have got me better care. Indeed, the worry of being a consumer (and with the knowledge that usually I am wrong in whatever consumer choices I make) would be detrimental to my wellbeing. What would have made my care better would have been for clinicians to listen to my concerns and treating me, not the figures from the path lab. That is happening now, but I fear that under PHBs what improvements I have seen will disappear in the rush to healthcare consumerism.

    1. Martin Routledge says:

      Richard mentions the 3 yr independent academic evaluation of PHBs. If you want to make up your own mind here is the link http://www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/2012/PHBE_personal_health_budgets_final_report_Nov_2012.pdf Exec Summary pages 9-12

  3. Colin Royle says:

    PHB’s are a wonderful option, there is no doubt about that. Yes the NHS is a wonderful thing, and as Martin says over and over again, he is proud of it and is not attacking the NHS. But the system previously DOES NOT work for all people.
    Take my dad, who suffers from dementia and his only options of care were generic and institutionalised. A PHB has allowed him to pursue so many of his own hobbies, has improved both his health and well-being and also that of his family. And has most probably kept him alive!!
    To say there is little evidence that PHB;s work or are effective is nonesense. I’ve yet to meet a family where a PHB has been implemented well where it has not really benefited their family. Personalisation is about options, the right to make care personal and beneficial to the individual. And to say PHB’s don’t offer this is complete ignorance. It may not for you, but it certainly does for me and my family, and therefore the PERSONALISATION aspect is proved!! Great article Martin

  4. I’m not sure the situation in the Netherlands is accurately presented in Martin’s piece.

    What I have seen in the debate is those who have starting asking reasoned questions which various government and certain junior shadow health ministers would far rather we didn’t ask, about the usefulness and downsides of personal health budgets, the response that comes back from those involved with such programmes professionally, is often rather emotionally manipulative. Rather than engage with the arguments fully, selected individuals are paraded as success stories, critics are accused of not caring about these individuals, whilst their serious concerns are ‘for another day’.

    ‘Vouchers’ isn’t a dog whistle but a serious point. I have asked repeatedly what the difference is between personal health budgets and Thatcherite vouchers, and no-one has been able to give me an answer (apart from that it involves buying sky plus and football season tickets). Which is of course something that I fully support anyone having the spare cash to be able to do, if they want, from a decent employment and benefit system, i just don’t see why we need to open our health system to a voucher system, with all the attendant risks that entails, to do it.

    Some more stories on personal budgets (including, you will see, from people who are strong advocates of independent living, empowerment and disabled peoples rights) are here.

    http://www.opendemocracy.net/freeform-tags/personal-budgets

    1. Martin Routledge says:

      Thanks for the comment Caroline – I agree we should, explore the usefulness and downsides of PHBs so that we can maximise the opportunities and minimise the risks. Another thing for me is to make sure they are provided as an option – people can ask for one if they believe they can be of benefit in their particular circumstances but don’t have to have one. Another important point is that you don’t have to take the cash – you can ask health professionals to agree with you how the resource is used to shape your care. Regarding people’s personal stories I’m sure we can agree that the voices of people actually using PHBs need to be heard in the debates. I don’t think there is a need to be selective about this – anyone using them should be heard. Thankfully the academic research team explored people’s experiences in the pilot programme (good and bad) so we can see what they said

  5. Max Neill says:

    I suppose the root of the question is how does the left regard people?

    Marx for example envisaged a society where he could hunt in the morning, fish in the afternoon, rear cattle in the evening and criticise after dinner.

    This would be the ultimate ‘personalised’ society, with nobody telling him ‘no, you can’t be allowed to do that with your allocation of our social resources’, and nobody either telling him that exercising personal choice in this way was a neoliberal betrayal of the priniciples of collectivism. He clearly felt that given genuine power over such resources, ordinary people could and would in general make good decisions about how we would use them, without the need for a friendly layer of benevolent expert bureaucrats to make such decisions for us, if any such layer was even a temporary necessity, it would have to quickly ‘wither away’.

    So the question is really: How much do you trust people to make the right decisions for ourselves? Listening to the least powerful, transferring power over our own destinies to the low paid worker, to the old, the sick and the poor, was what the first coops and trade unions were for. Exactly where and when did socialism become conflated with standardisation, with conformism and queues? My reading of the great socialist thinkers was that they knew bread was vital, and so were roses too.

    Personal budgets are democratic. They treat people as citizens. They give people dignity, choice and the chance to take risk around their own destinies. Once people get a taste of it, they want more of it. Maybe we should be calling for this kind of self-determining power that recognises that people are experts in our own lives to be extended to every aspect of our life. Why can’t ordinary people have the same power to control our own streets, our own workplaces, our own communities? How might things be if we did?

    Personal budgets are going to happen. They are a necessity in a post-Fordist society. How they happen will be determined by who makes them happen. If the left wash their hands of them, they will absolutely be left in the hands of the neoliberals and the big corporate entities, and become something very different from the democratising empowering tools for change that they could be. So don’t stand up there interpreting the world. Get down here and change it.

  6. Sally Percival says:

    I want the best for the people I love and care for and for us personal social care and health budgets have been l essential. My mother was placed into a care home following a fall at home, she was not given a choice about it, there were no discussions about options, it was just what happened. In the care home my mother deteriorated and she lost 5 stone and importantly lost the will to live, she became a shadow of her former self as she was being eaten away with bed sores and depression. Then one day I went into the home to visit mum and she was lying flat in bed chocking on her own vomit, her call button had been hidden in a draw and I am sure that without my intervention she would have died. I could stand it no longer and fought for her to come home with a personal budget. Within 2 months her inner self was healing nicely and the sores where gone, we chose the people who came to support her and mum grew to trust them and importantly the carers learnt how to support and care for my mother. Unfortunately my mother’s dementia began to get worse and after a few meetings it was decided that she should be jointly funded by health and social care, increasing her care package to cover nights, before personal health budgets this would have been a disaster for us as it meant that my mother would have been given a service that she fitted in to with no choice, but with a personal health budget she was able to choose the same carers that support her during the day that know her, giving total continuity. I am not saying that people should be made to have personal budgets but there should be a choice.Person health budgets undoubtedly saved my mothers life, she is now happy in her own home supported by people she chose.

  7. I repeat what I said about school vouchers and Wikipedia describes what I refer to:

    A school voucher, also called an education voucher, is a certificate of funding issued by the government, which parents would be able to apply toward tuition at a private school (or, by extension, to reimburse home schooling expenses), rather than at the state school to which their child is assigned.
    Under non-voucher education systems, people who currently pay for private schooling are still taxed for public schools; therefore, they fund both public and private schools simultaneously. Opponents of vouchers believe that all citizens have an equal responsibility in the investment of a public education. The choice of private school should not involve public money. Via offsetting the cost of private school tuition, vouchers and tax credits are intended to allow students and families to choose the school that best fits their needs. Opponents of school vouchers say that choice already exists without vouchers and allowing families the option of withholding their tax obligation undermines the public education system by threatening its funding.[1]

    The idea of these personal budgets or vouchers; is identical in what the are designed to achieve; they are a means of rationing and promoting market philosophy that you are given choice. That choice of course is also limited by the private sectors ability to deliver, whilst governments use it as a means to cut public provision.

    There have been many institutions within the NHS that have been cut over the last thirty years in order to so say save money, hospital closures that are now housing estates.

    It is only when you examine the cost of private care homes and the care they provide that you start to realise what the real agenda is behind all these changes,

    Isn’t it time those that call themselves left wing or socialist realised that change is not always beneficial and how many examples need to be produced before the penny actually drops.

    We are not spending enough on the NHS and should be expanding our horizons not shrinking them, how did we pay for everything in the past which has now been privatised or does not exist, mental health is now virtually non existent.

    Just to reinforce my previous statement, Here is a quote from Alan Greenspan:

    You don’t have to take my word for it. How about Alan Greenspan? He said (PDF): ”[A] government cannot become insolvent with respect to obligations in its own currency. A fiat money system, like the ones we have today, can produce such claims without limit.”

    So the money is there to have whatever NHS we choose without limitation, We are being deliberately rationed to protect private sector interests, not to serve the public interest.

  8. The understandable fear over personal health budgets is that they are a slippery slope to privatisation. But that has not been the experience of the individuals and families I have worked with over the last 6 years. Their experience has often been of a much cherished NHS that does not respect the things that matter most to them and their families in the way in which it provides care, whether that is having the same carers come to their house every day or being able to make their care fit around a job they love. A personal health budget has been a mechanism to make the system respond to the things that matter most to them in how their care is delivered, to make the system listen to their priorities and concerns. In this way, it is different from a voucher because it is not just about getting the same thing from a different provider. It is about working with the expertise of individuals and families in making decisions about how they are cared not just when and where.

    Some people are lucky enough to get the care they want, the way they want, without a personal health budget. It would be nice to think that bureaucracies can be equally responsive to every individual but the evidence is that they struggle to do so unless we devolve more power to individuals and families and that is what personal health budgets do.

    1. What is also so strange about the fear of personal health budgets on the Left is the fact that social justice demands that power, control and economic resources be redistributed towards those who are oppressed or exploited. [It is not an excuse for the exercise of power by professionals or other powerful groups – that’s the problem, not the solution.]

      There are of course tricky questions to resolve about how this is done and when it is more appropriate to make decisions at a national or local level – rather than at an individual level. We are only at the beginning of exploring this issue and certainly the current government gives one no faith in their integrity, understanding or ability to address those questions. Their only concern is to pour further misery on the heads of those already disadvantaged.

      But personal budgets were not dreamt up by this government, nor the last one. They are just one response to the rightful demand of individuals to get support or healthcare, without sacrificing their freedom. Freedom for all is the goal of any decent account of social justice. This is no more neoliberalism than is the demand for a basic income for all citizens.

  9. Very interesting discussion (which I have not finished reading). One concern I have is that an option to receive a PB swiftly becomes an obligation to receive one, and thus undermining the relationships people have with their current healthcare professionals. This is what I have seen in social care. The impact on valued existing services that could go under without core funding is also an issue. However this is not a reason to ditch the idea.

    I’d also recommend a series of papers the Confed did on this – with a particular focus on mental health, where patients are particularly keen to claim greater autonomy.

    http://www.nhsconfed.org/Publications/briefings/Pages/Personal-health-budgets.aspx

    Meanwhile, I’d like to put Martin’s first paragraph on a t-shirt!

  10. Ray Chandler says:

    An important factor usually omitted from discussions about personal budgets is everyone’s right to equality as citizens. If operated properly (and they often haven’t been, but that’s another issue), personal budgets enable people to choose their own solutions to their care needs and manage them as they see fit.

    With the imagination and resourcefulness that comes with self-determination, people are using the flexibility of PBs and PHBs to create solutions that suit their needs in ways that might not suit anybody else and certainly could not be wheeled out by the state as a standard provision.

    This option has always been available to people wealthy enough to pay for their own care support, but there has previously been no such choice for people whose lack of wealth meant they needed state support. They got what the state decided they needed, in the form the state provided.

    Such difference of entitlement between the wealthy with care needs and the poor with care needs is hard to view as anything other than discrimination – an abuse of human rights.

    I find it hard to see how denying people the right to equality can be a good thing ideologically, however far to the left one leans.

    The worry that it’s a form of rationing would be pertinent only if it was replacing something that isn’t also a form of rationing. Allocating individual funding for social care or continuing healthcare – however it is to be provided – requires the person’s need to be calculated and a budget set. Personal budgets are no different in this respect.

    This really is a different scenario from acute care and other public services requiring consistent, unrationed (individually), professional delivery.

    For meeting long-term care needs, the flexibility of PBs and PHBs brings huge advantages, and many people have shown by their own creativity just how empowering and life-transforming this system can be.

    The system needs improving, particularly in the areas of resource allocation, assessment, support planning and choice & control. But it is the only model so far with the potential to achieve the equality of independence and self-determination that all citizens have a right to. And it really needn’t pose a threat to the ideology of the left.

  11. Sue Bott says:

    The late Roy Webb & I used to discuss why the left often didn’t get personal budgets and direct payments when we both worked at National Centre for Independent Living. Roy was an inspirational disabled person who practised his socialist beliefs every day making space in his home for other disabled people struggling to achieve choice, control and self determination in their lives and employing his own team of personal assistants. We didn’t understand why the human rights of disabled people had to clash with socialist beliefs of being in control of the means of production and being able to reach our full potential.. We concluded that people in public service felt less challenged working for us than with us and that our so- called vulnerability allowed them to justify controlling our lives.

    I’m passionate about personal budgets not just because there is so much evidence that they work but also because people should be able to reach their full potential with the support of what they know works best for them. Yes things are not quite right with the implementation including the use of prepayment cards that restrict choice, but that is not the fault of the idea – it’s the fault of those who won’t embrace the idea.

    If you are looking for the privatisation threat don’t look at personal health budgets because you will be looking in the wrong place. The real enemy of the NHS lies with commissioners commissioning large scale, depersonalised contracts in the private sector.

    1. Ivan Lewis says:

      I warmly welcome Martin’s initiative to generate a balanced debate about personal budgets on the centre left.
      Currently, wealthy people have option of buying personalised private healthcare outside of NHS. Why shouldn’t people on low and middle incomes have same right to exercise maximum control over their allocated resources and care within the NHS framework. This can be in form of cash transfers or simply being able to direct how an allocated budget is spent in a way which meets their personal needs. Some people want to employ their own support workers, others don’t want this level of responsibility. Too many people assume direct payments are the only form of personal budget when they are in fact only one option.
      There is no reason why patients and carers shouldn’t pool budgets in localities so there is not just individual but community control/ shaping of services.
      Finally, personal budgets are potentially a brilliant way of joining up services by combining funding streams. NHS and social care but housing and other community services too.
      I acknowledge some councils and NHS organisations are bastardising personal budgets through poor implementation. But this doesn’t make the principle wrong. It is also nonsense to blame the personalisation agenda for Tory led cuts. They are having a devastating impact on all service models including many traditional services.
      As we think about Labour’s offer to the electorate at next election it is right we repeal the awful Tory led Govt’s NHS and Social care act. But we will also offer people a vision of a new, fairer system able to cope with the challenges of an ageing society, increasing nos of people with long term conditions and rising citizens expectations. There will be finite resources and growing demand. We should redistribute power from the state and professionals to citizens, families and communities. As Jon Cruddas has said we must also shift public service resources generally from reactive to preventative interventions. Personal budgets alongside info/ advice and advocacy should be at heart of our vision for people power. People power for the many not the privileged few.
      That is the politics of centre left not the right.
      Ivan Lewis
      MP- Bury South
      Care Services Minister(2006 to 2008).

  12. Shibley says:

    Yes, but the “offering” of Labour should be completely clean about the policy direction of personal health budgets.

    You will yourself note that your statement,

    “Finally, personal budgets are potentially a brilliant way of joining up services by combining funding streams. NHS and social care but housing and other community services too.”

    is not inconsistent with the narrative I discuss recently on the ‘Our NHS’ website.

    http://www.opendemocracy.net/ournhs/shibley-rahman/tomorrows-world-labours-big-nhs-idea

    I have not noticed people ‘coming clean’ totally in this ‘balanced debate’, I am afraid.

    Merry xmas

  13. Shibley says:

    And besides I really wish people would be able to distinguish between marketing shill and proper research in personal health budgets

    (I am not referring to Martin Routledge’s piece in this general criticism)

    another one of my pieces again

    http://www.opendemocracy.net/ournhs/shibley-rahman/shop-til-you-drop-0

  14. Jos Bell says:

    Personal budgets will work for some people, but not for those who have difficult complex needs and for whom organising their own expenditure will be well nigh impossible. They bring with them several risks : inappropriate packages; insufficient packages; hidden costs which might be added as top ups; the intrustion of commercial promotion; lack of capacity to cater for changing conditions – for starters.

    1. Jos Bell says:

      intrusion… not a subversive attempt to invent a new verb !

      1. martin routledge says:

        Thanks for the comment Jos. I agree people should not be made to take a PHB as cash if that doesn’t work for them. There are many people with complex needs using them very successfully – sometimes with support from families, sometimes with NHS staff managing a non-cash PHB. The risks you note are real but are being managed in practice and some of them apply to any form of health provision. Happy to share examples if you are interested

  15. Shibley says:

    I couldn’t agree more with Jos.

  16. Ray Chandler says:

    I would echo Martin’s response to the comment by Jos that “Personal budgets will work for some people, but not for those who have difficult complex needs and for whom organising their own expenditure will be well nigh impossible.”
    Here in West Sussex there are examples of PBs and PHBs working very well indeed for people with extremely complex and profound needs. Of course they are helped with the management, either by families or by user-led organisations or other circles of support, but the outcomes are far better than was achievable previously.
    The big question surely is: Just because PBs might not work for some people, should we deny them to people for whom they are very beneficial?

  17. Martin Routledge: Thanks for the story of your mum and her wishes not to go to a nursing home in her last days!! Personal budgets help large social care systems and managers to refocus on individuals and families versus funding all but what was desired and requested. My new book,. Public administration and disability: community services administration in the US (Racino, in press, 2014) has a chapter on Public and individual budgeting, including Great Britain’s personal budgets, direct payments for personal assistance services, family cash subsidies, the US consumer-controlled budgets, and international individual financing approaches, among others. The link is: http://www.crcpress.com/authors Julie Ann Racino

  18. There’s a lot of debate here including by people with long term conditions, with well referenced concerns. https://www.opendemocracy.net/freeform-tags/personal-budgets.

    I agree with Shibley, it would be good if those noisiest of advocates of personal budgets came clean about their own financial stake in such a policy. Martin Routledge’s personal budget management company (and it’s highly paid execs) is referenced in these articles,though he doesn’t mention it here.

    1. Martin says:

      Just noticed this. I’m not sure what a personal budget management company is but I don’t run one!

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