Don’t worry, be happy!

Carer Colin Royle, who looks after his dad, Malcolm, who has suffered with dementia since 2005, examines the “anxieties” of personal health budgets:

Image of Colin Royle and his dad, Malcom, who suffers from DementiaA great quote by Mark Twain that has always stuck with me – “I’ve had a lot of worries in my life, most of which never happened”.

This recently came to the forefront of my mind when I attended a meeting about the implementation of pre-paid cards. In case you’re unsure what a pre-paid card is, they are one method in which a person may manage their allocated money in both health and social care; an alternative to a direct payment. But of course, like most things, that isn’t all they are.

Prepaid cards are also – a way of reducing administration, a potentially less bureaucratic system, a potentially more bureaucratic system, a source of fear for those in receipt of direct payments, a source of relief for commissioners, a source of relief for those in receipt of funding, a source of tension, a headache, a cure for anxiety and a cause of anxiety, and many more things!

Of course, what they become is largely down to those that implement pre-paid cards at a local level.

Many of the fears that people have around them perhaps aren’t specific to the cards themselves, but also to the roll-out of personal health budgets as a whole.

People want choice and control. People want to be seen as experts in managing their own lives. People want to be trusted and respected and appreciated. People want to have fewer worries in their lives. And I’m talking about ALL people, not just those who commission or are in receipt of care.

When it comes to the implementation of personal health budgets, I know that people have many concerns. What if an individual runs off with the money? What if it is spent badly on things that simply do not work? Who is responsible for a person’s health once a plan is signed off – the individual in receipt of the money, or does it still lie with the commissioner? What if something then happens to that individual?

Recipients, too, have their own concerns. What if personal health budgets are used as a way of cost-cutting? What if prepaid cards are used as a form of over monitoring? What if the outcomes of the care plan can’t be agreed? What if it turns out I don’t like this package of care, can I go back to the old system? What if I don’t get the choice and control over how I manage the money or how I spend the budget?

Most of these fears can be allayed by good communication and to me, good conversation epitomises those things that a personal health budget is trying to achieve. People should walk away from a good conversation feeling listened to, treated as an expert, having more choice and control and feeling less worried and anxious.

Much work has gone into ensuring that people have good, solid guidance so they can best implement personal health budgets. The evaluation showed the best outcomes are achieved when people have the greatest flexibility around how the money is held and how it is spent.

It also showed the importance of people having an indicative budget so they know how much money they have to spend on their care. And it also highlighted the change in relationship between professionals and people in receipt of care that it can enable.

The right to ask for a personal health budget has now finally arrived. I know and understand many of the fears that people have, on all sides of the spectrum. But let’s trust that people won’t run off with the money – as 99 per cent of people don’t (an actual statistic).

Let’s trust that people will spend their money wisely, as the evaluation has shown.

Let’s trust that people benefit from making decisions and having choice and control in their own life.

Let’s trust that this can work, as the evidence suggests it will.

For not worrying about the things that may never happen, could make a lot of people in receipt of care much, much happier.

Colin Royle

Colin is a co-founder of Peoplehub CIC – a not for profit organisation made up of people with lived experience of receiving a personal health budget. Peoplehub are a strategic partner to NHS England in the implementation of personal health budgets and Integrated Personal Commissioning and also work with Clinical Commissioning Groups in setting up local peer networks that enable genuine collaborative working.

Colin was previously a carer for his father Malcolm for seven years until he passed away in April last year. Malcolm suffered from a rare form of dementia and started receiving a personal health budget in 2009.

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  1. Connie Govan says:

    Colin’s acceptance of PHB is being promoted by NHS England as him having ‘the choice.’ This is the same ‘choice’ that parents were purpoted to have if they had an ‘educational budget’ to spend on a school of ‘their choice’, a political precursor to the privatisation of education. What children and patients need are good local schools and good NHS care.

    Have a look at Socialist Health Association article July 2014 ‘This is Not Scaremongering or conspiracy. Personal Health Budgets Do Promote Privatisation’

  2. Richard Grimes says:

    I have had type 1 diabetes for 40 years, and since then I have been notching up other the long term conditions (retinopathy, hypothyroidism). Personalisation of my care is very important to me. The big issue I have with Personal Health Budgets is that they do not personalise care.

    Forty years ago I was an ill eleven year old boy, diagnosed and discharged and then, me and my family, were left to manage a life threatening condition. I know my condition because for most of those 40 years I have been the person who has been managing it. For much of those 40 years I was not a patient to clinicians, I was a number: HbA1C. I cannot tell you how demoralising it is, every six months for a doctor to barely glance up from the blood test results and tell me that I must do better. Years after taking my last school exam, I had to go through the same exam anxiety twice a year, being told that I had failed and needed to improve. Mention to any type 1 diabetic the term “tyranny of HbA1C” and you’ll get a long despairing story.

    Then about ten years ago this changed. There was a new consultant who after introducing himself he asked me “how are you feeling?” This was an unexpected question. In the previous 30 years I had never been asked this. This simple question indicated that the doctor saw me as a person rather than as a collection of test results. And the rest of the consultation showed this: we had a conversation about how I was treating my condition and he asked me if there was any way he could help. We were equals in managing my condition, and it was a new experience for me. This is personalisation and personal health budgets can do nothing to make this happen. What can change this is patient involvement.

    Personalisation comes about from professionals listening to patients and working with patients. PHBs are simply an opt out, like private education is an opt out and private health insurance is an opt out. It is an implicit declaration that, to the patient, the system is not working. And often this is true. But my approach is not to opt out, but instead, to make the system work. This is why I contribute a lot of my time voluntarily through patient participation. I find that if patients get together with commissioners and clinicians and talk through what works and what doesn’t, services can be improved and people can get personal care.

    Colin rather eulogises about pre-paid cards. I object to direct payments because they are an opt out, but at least they are a mechanism to give patients money and allow them to spend it on what they want. I would absolutely refuse to have anything to do with pre-paid cards. The cards exist solely to allow administrators to monitor their use. When they were introduced in Cumbria, this was give as the main reason, social care commissioners want to ensure that service users were buying what they considered to be the right things.

    And I can understand why commissioners insist this. When I spoke with local CCG commissioners about PHBs I asked if a patient with chronic pain could use their budget for acupuncture, initially the commissioner said they they could. Then I pointed out that since 2010 local commissioners have refused to fund acupuncture, so PHBs will create a two tier system where those with PHBs will be able to get treatments denied to those without them. The commissioner thought a while and then said that the CCG will have to draw up a list of treatments that patients can purchase with their PHBs. At which point, of course, any vestige personalisation has disappeared! Pre-paid cards are a way to ensure that patients spend the money in the way that commissioners want.

    I know people with complex needs and so I asked the CCG how those people would manage a personal budget. I was told that in those cases a personal budget management company will be used, and patients would have to pay for this service. Thus, part of their budget for healthcare will go to a private company! We are already paying for the management of budgets, they are called CCG commissioners, so PHBs are simply duplicating administration in the worst way: by privatising it.

    The main paper from the evaluation of personal budgets, Forder et al, is quite clear. PHBs do not reduce urgent care, do not improve health or mortality and do not cost less (but do not cost more, although a recent paper suggests that PHBs do cost significantly more). The Forder paper does say that there is an improvement in care related quality of life and psychological well-being, but this is only apparent in people with large budgets. From Colin Royle’s bio, I guess this applies to him. However, out of the 15 million people with long term conditions personal health budgets will be small and the evaluation shows that there will be no improvements in quality of life for people with small budgets. A PHB will provide me, a patient with three long term conditions, with nothing.

    I am happy that Colin is enthusiastic about PHBs for his father and I hope that it helps him get better care, but we have to recognise that the evaluation of PHBs shows that they give limited improvements for a few people and the roll out to the 15 million people with LTCs will achieve nothing. More concerning to me is that the obsession with PHBs is diverting commissioners away from the more important concern: personalisation of care through patient participation with commissioners and clinicians.

    • Colin says:

      Hi Richard,

      Short and sweet this. I take your comments on board and it sounds that for you, you would prefer not to have a personal health budget. But for us, and many families, we would. Both should have that option, to have or not have. And that is exactly what personalisation should be, choice and control for each and every one of us, in its various forms.

      Personal health budgets should become available to everyone, and forced upon nobody in my humble opinion. Thanks for your comments : )