From April 2015 all Clinical Commissioning Groups (CCGs) must be able to offer Personal Health Budgets (PHBs) to all patients who have a long term condition (LTC). Personal Budgets were mentioned in the Conservative 2010 manifesto, but the plans attracted little scrutiny and few people were aware of them. For most of the 15 million people with a long term condition, the first they will hear of PHBs will be when their CCG offers them one.
I have a long term condition. For 38 years I have had type 1 diabetes. It has been mostly complications-free, although I do have eyesight loss due to diabetic retinopathy. I use services from my local GP and my local hospital, and next year I will be offered a personal care plan and a personal budget. As a patient I am very involved with my local Clinical Commissioning Group and I have attended meetings with managers to see how Personal Health Budgets will work. They seem to be wrestling with many problems.
In fact the research funded by the Department of Health says that Personal Health Budgets do not improve health, do not improve mortality, and do not save money. The most positive evidence that the earlier, government-funded study provides is that people who have large Personal Health Budgets feel more in control. But the same research shows that there is no improvement for people with smaller PHBs. And the latest research suggests that Personal Health Budgets cost considerably more and had in some cases worse results.
Some charities have been expressing their concern about Personal Health Budgets for some time. Diabetes UK believes “personal health budgets are not suited to clinical diabetes care delivery and may impact negatively on quality of care and lead to the fragmentation of services”.
Regardless of the scant evidence, Personal Health Budgets are now government policy.
Many of the presentations about Personal Health Budgets – for patients and for NHS managers expected to implement the policy – optimistically quote research that claim they improve people’s lives, but the examples given are the same limited feel good stories.
Allowing people with mental health issues to use a Personal Health Budget to buy a football season ticket, for example. This may well improve wellbeing, but in a time of NHS cuts, where people are being denied cataract operations (or told they can only have one eye done) the Daily Mail will ask why one patient will be paid by the NHS to see a football match while it refuses to pay for another patient to be restored the power of sight. I can fully predict that the tabloid will hound such a Personal Health Budget football fan, negating any wellbeing that may have come from the ticket.
When Personal Health Budgets are widely rolled out I doubt CCGs will allow them to be used for items like football season tickets. Such examples do not pass the “Daily Mail test”.
Other supposed examples of increased ‘choice’ also evaporate under scrutiny. I asked one commissioner if someone with chronic pain could use a Personal Health Budget to pay for acupuncture. Chronic pain is as much emotional as it is physical and some people do respond to acupuncture.
The commissioner told me that this would be possible, so I pointed out to him that his CCG had stopped paying for acupuncture for pain management in 2010 and that if patients on Personal Health Budgets could buy acupuncture this would create a two-tiered service, where treatment will be only available to those with such a Budget.
The commissioner – thinking on his feet – told me that the CCG would draw up a list of treatments that patients would be allowed to purchase. This one small example, pulling at threads of a very poor policy showed that in practice CCGs will not give patients more choice. Ultimately, CCGs will tightly monitor what patients can buy. Personal budgets have been available for social care for many years now and local authorities have perfected such monitoring of social care users’ budgets through prepayment cards.
So, if they clearly won’t result in more choice, why are Personal Health Budgets being promoted as government policy?
As I suggested to a commissioner, most patients will not be able, nor want to manage a budget. (If you saw the bad mood I was in for weeks while trying to organise the tradespeople to install something as trivial and non-life giving as my kitchen, you'll realise that it will be a severe detriment to my wellbeing to have to manage the budget for my life-giving diabetes care.)
The commissioner told me the solution to that - all personal budgets in my area would be managed by a charity. That is, a non-publicly accountable organisation, with no statutory patient involvement. This charity would manage the budgets of patients, and for this service they would take a management fee. There are lots of such companies starting up right now, and most claim to be charities or social enterprises. Being not-for-profit does not guard against such organisations being staffed by over-paid managers.
For example, the company that is most vocal about Personal Health Budgets is In Control. Their 2013 accounts filed at the Charity Commission indicate that they have 11 full time equivalent staff, and their total salary costs were £523,000. This averages per employee (£48,000), at almost twice the nation’s median wage (£26,000), showing that In Control is a very lucrative business for the staff.
We are told that patients with Personal Health Budgets could pool their money together and pay for services. But, isn’t that what CCGs do already? NHS commissioners have been doing this for years, with far more experience and negotiating clout than groups of patients or management-fee charging charities.
For example, my neighbour has learning difficulties. A few years back the county council (who commission social care) closed the day centre she used and gave her a direct payment – a personal budget – instead. This was a terrible blow to her being isolated from the staff and friends that she knew from the centre. But, the council told her that she could pool her direct payment with the other former users of the centre and together they could hire their own location and staff. Honestly, people really do say such things.
Personal Health Budgets will damage the special covenant patients have with the NHS. For most patients with Long Term Conditions, Personal Health Budgets will make personalisation less likely rather than more, as commissioners will be distracted by thinking that only Personal Health Budgets will deliver personalisation.
In fact they deliver individualism and often, isolation.
I want personalisation of my care, but it does not need me to have the money to make it happen.
For example, I take a handful of pills every morning and sometimes I get to the end of the week and find one blister pack has an extra pill left, with me unable to explain how. How about a single blister strip per day containing all the drugs I need to take? That would be true personalisation because the strip will have my medication and only my medication. Although this would be more expensive than currently, it would reduce medication errors and thus quite possibly it could save money. But Personal Health Budgets won't deliver this, because this is a service that is not available for purchase. What will deliver such a scheme, is an NHS working as a big organisation to make sure that such a service is available to patients who need it.
Another example. I take two types of insulin from two different companies. I inject using an insulin pen that takes the insulin as “cartridges”. Each insulin has a different cartridge which means I can only use the pen from that insulin’s manufacturer. Where is the personalisation here? I need pens that deliver large doses, with a loud click and large indicator dials (because I have poor eyesight). An electronic lid that indicates when I last injected would also be useful (yes, I do occasionally forget to inject). The pens I use have some, but not all of these features, and if they have these features it is because the insulin manufacturer wants me to have them, rather than me choosing to have them. Other diabetics will not want the features I want; they will have their own requirements.
Personal Health Budgets won't deliver this personalisation because the market as it exists is defined by the drug manufacturers, not by patients. An NHS serious about personalisation would use the large market of the NHS to tell the insulin manufacturers: if you want to sell us insulin, you must use a standard cartridge. If insulin cartridges are standard and patent free, it will stimulate a market to produce a range of pens so that I can choose one that suits me.
When the restrictions are identified, I don’t think many patients will want personal health budgets. It just isn't what we expect as being the NHS way to do things.
Personalisation through personal budgets is, I am told, particularly popular in the US. But let’s remember what the NHS means to us in the UK. We know that we will get care appropriate to our condition and that care is provided according to our clinical need. That may mean that when waiting in a clinic someone sicker gets seen before you, but we accept this because we know that if we were that sicker person, we would be seen sooner too. We know that the NHS does not discriminate due to wealth, location, gender, age, ethnicity, sexuality or disability. Sickness is a powerful leveler and the NHS recognises this. We know that the NHS is not judgmental, we are offered help to improve our condition, but we are not blamed for how we are. But above all, the NHS is the most fundamental of the welfare state's safety nets, when we need medical care no one ever doubts that the NHS will be there for us.
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