Private patients and the Efford Bill

The Efford Bill is a good start into reversing the damage that is the Health and Social Care Act (the Act that "senior Tories" who couldn't be bothered to listen to experts now describe as gobbledegook). However, as you would expect with such a short bill there are few details. In this post I will cover one issue: NHS trust providing private services.

Private Patients and Foundation Trusts

The 2006 NHS Act has a section to restrict the income from private patients that a Foundation Trust (FT) can generate s44:

(1) An authorisation may restrict the provision, for purposes other than those of the health service in England, of goods and services by an NHS foundation trust.
(2) The power must be exercised, in particular, with a view to securing that the proportion of the total income of an NHS foundation trust which was an NHS trust in any financial year derived from private charges is not greater than the proportion of the total income of the NHS trust derived from such charges in the base financial year.
(3) "Base financial year" means the first financial year throughout which the body corporate was an NHS trust or, if it was an NHS trust throughout the financial year ending with 31st March 2003, that year.

This says that the income from private patients as a proportion of the total income of a Foundation Trust must not be higher than the proportion in the financial year 2002/03. If an FT generates a higher proportion it will be in breach of its "terms of authorisation" and this may result in regulatory action (most likely a look of stern disapproval from Monitor).

The section also implies that an NHS Trust which intends to apply to become a Foundation Trust must make sure that its private income generation was proportionally the same as it was in 2002/03 financial year. Since the then government said that every NHS Trust had to become a Foundation Trust this section was more influential on aspirant NHS Trusts than on authorised FTs (GOSH authorisation as an FT was delayed by several years because of its rampant private business). However, the rule was easily circumvented since the section involves income and not numbers of patients, and trusts came up with clever dodges like joint ventures (The Christie) or moving the private work to a charity (GOSH) so that the income to the NHS Trust was the profit of the joint venture company (or the surplus of the charity, donated to the trust) rather than the revenue for private patient treatment. Although the regulator, Monitor, took action against such dodges, the action was closer to a stern look of disapproval than to actual action that would reduce private patient activity.

Although every NHS Trust "had" to become a Foundation Trust, there was no rigid timetable and no sanctions against NHS trusts that failed to become an FT, and so, in practice, NHS Trusts with large incomes from private patients just generated more private business. There were lots of criticism of section 44, particularly in the case of patents. If a trust creates a new device, drug or treatment and decided to create a worldwide patent, the income from licencing under this patient (even if it does not involve UK patients) was still considered part of the private patient income. Furthermore, the omission of the numbers of private patients in the law meant that a trust could treat lots of private patients but charge them small amounts and still meet the s44 criteria.

Health and Social Care Act

The Health and Social Care Act (HSCA) repealed section 44 and replaced it with a more lax restriction. The Tories hoped that repealing this section would result in Foundation Trusts creating private businesses, but this has not happened, certainly not at the rate that the Tories hoped for.

Section 164 of the HSCA replaced the old s44 with this section:

(2A) An NHS foundation trust does not fulfil its principal purpose unless, in each financial year, its total income from the provision of goods and services for the purposes of the health service in England is greater than its total income from the provision of goods and services for any other purposes.

This says that NHS income of a Foundation Trust (again, omitting NHS Trusts) must be more than the income from its non-NHS services. It is erroneously quoted as "49% private patients" for two reasons. First the non-NHS income can be more than 49%: it can be 50% less £1. (Does this matter? Yes it does. A small NHS trust will have an income of £200m so the 1% difference between 49% and 50% is £2m, and £2m is not a small amount of money.) The second reason this is not a "49% private patient income" rule is that the section does not mention private patients, it says "total income from the provision of goods and services for any other purposes". That is, any income other than income from Clinical Commissioning Groups (CCGs) or from NHS England. This "any other purposes" includes local authorities, charities and even car parking charges (paid by NHS patients). So a trust that has no private patients will have a non-NHS income under this section, potentially an income of many millions. Yet again, our law makers have made a bad law.

Neither s44 of the NHS Act, nor the new section created by s164 of the HSCA covered NHS Trusts. It is clear that about a third of NHS trusts will never become Foundation Trusts, which means that those third will know that the private patient income restriction does not apply to them in practice. Further, both sections have downsides, covering services other than private patients.

Efford Bill

The Efford Bill has two clauses that cover private patient income: clause 7 covers private patients in Foundation Trusts and clause 8 covers NHS Trusts. In effect, they say the same thing (and hence finally applies private patient income restrictions on NHS Trusts): The following is from clause 7:

(3) An NHS foundation trust shall ensure that its total income from the provision of goods and services for provision of services provided to individuals for or in connection with the prevention, diagnosis or treatment of illness otherwise than for the health services or for which charges are made by the trust is not greater than either—
(a) such percentage of its total income from the provision of goods and services in connection with the prevention, diagnosis or treatment of illness as the Secretary of State shall direct; or
(b) such higher percentage as shall be determined by the Secretary of State for an individual NHS foundation trust.

This says that there will be a private patient income cap, and it will either be a universal cap or it will be set on an individual trust basis. This does not say what that proportion will be, so a Tory Secretary of State can set the cap to 50% to get the same effect as the HSCA. Allowing the Secretary of State to set individual caps is a sop to the rampant privatisers in trusts like Royal Marsden or GOSH who have built up their private businesses to be significant proportions of the trusts' income.

The phrasing of the clauses "for which charges are made by the trust" implies private patients, however, it still covers income, not the actual services or numbers of private patients.

Two Tier NHS

The main reason for restricting private patients is to prevent the creation of a two tier NHS, where NHS patients in an NHS hospital will get second rate services compared to private patients. The Efford Bill clauses do not address this issue.

There are two basic principles that need to be met to prevent the creation of a two tier system:

1. The treatment of private patients do not adversely affect the treatment of NHS patients
2. Private services must not be subsidised by the trust from NHS income.

The first principle says that NHS patients should not see the quality of their treatment deteriorates when the trust treats private patients. "Quality" is a broad term, and it could cover things like private patients not having to wait their turn at an outpatients clinic, so the NHS patients have to wait longer, or the re-scheduling of NHS patients treatment because a private patient has chosen to be treated at that time. However, I think the best metric is waiting times, indeed, I think that waiting times are so important that this is effectively a subclause to principle 1:

1. a) A trust will not be allowed to treat private patients in a speciality where it is not meeting the 18 week referral to treatment target for NHS patients.

The 18 week referral to treatment target (RTT) is a guarantee to NHS patients. A common cause for patients to pay for private treatment is that they are waiting too long. A trust that wants to have private patients (and there are many reasons why they will want this, other than income) there is an incentive to have long waiting lists, so NHS patients have to suffer so that the trust can increase the numbers of private patients.

The second principle says that a trust's private income must be calculated in a business like way, and that there should be no overt or covert subsidies. An example of overt subsidies are diagnostics. If a private patient has a MRI scan that patient should be charged a commercial rate for the scan, they should not be charged the NHS tariff rate which is typically lower than commercial rates.

Covert subsidies are more nuanced. For example, every NHS trust treats emergency patients and so have intensive care units (ICU) able to treat the most ill of patients. Private hospitals typically do not have ICUs, or if they have a unit it is a low level unit. This means that if something untoward happens the private hospital calls 999 and the patient suddenly becomes an NHS patient. Private patients in an NHS hospital have the reassurance that the skills and equipment to handle emergency patients are on site, and indeed, this is often a marketing point for the trust's private patient unit. However an ICU is not cost free, the unit is paid by emergency tariffs and capital charges are paid from the trust's general income. The unit exists for every patient treated by the trust since potentially every patient may need it, and hence the payment for every patient will include a contribution to pay for the ICU. Similarly, private patients should contribute to the funding of the facility, if they don't then that is a covert subsidy.

Amending the Efford Bill

The Efford Bill should have sections to address the principles given above. On an annual basis, an NHS Trust or Foundation Trust must meet the two principles. In the case of NHS Trusts there should be an annual declaration from the trust board that the two principles have been met. In the case of a Foundation Trust the trust's Council of Governors should provide this declaration. In both cases, the declaration will typically come from the trust's auditors who will have a duty to inspect the trust's private patient business.

Meeting the RTT target is so important that on a quarterly basis achievement the RTT target should be evaluated and if the target is not met the trust should only be allowed to treat private patients in the failing speciality following quarter if the trust can give credible assurances that it will meet the target in that quarter.

There are two more changes that should be made to the Efford Bill as described in the next section.

Reasons for Private Income

The usual reason given by trusts for treating private patients is that it provides extra income for the trust (hence why principle 2, above, is important). However, the income from private patients is rarely large (not every trust has a thriving private patient business like GOSH). Using private patients to subsidise NHS treatments has several issues, not least because few private patients like to be treated like a cash cow to subsidise NHS treatments. If NHS tariff is too small to cover the cost of the treatment the solution is to increase tariff, not to subsidise NHS treatments by other activity.

To address this issue the Efford Bill should have a section that says that NHS patients must be taxpayers funded. At the beginning of the bill is a section that says that NHS treatment should be free at the point of use (a version of this section has appeared in NHS Acts since the 1946 Act):

(4) The services provided as part of the health service in England must be free of charge except in so far as the making and recovery of charges is expressly provided for by or under any enactment, whenever passed.

The mention of charges here refers to the co-pay that exists in the NHS: dental charges, prescription charges, charges for devices like wigs etc. While such charges are abhorrent it is unlikely that they will be removed. There should be an additional clause that says that notwithstanding the income from the charges mentioned in section 1(4) NHS treatments should be funded wholly by the taxpayer. This will remove the excuse that many trust's give that they have to have a private business to subsidise NHS patients. It also puts an onus on Monitor and NHS England, who set the NHS tariff, to ensure that tariff covers the costs of treatment.

The main reason for private patients is HR. Consultants are currently able to do private work even though they are contracted to an NHS organisation. Private patient units in NHS hospitals mean that the consultants do not have to go offsite to run their private business. In all other sectors of the economy this would be called moonlighting and would be disallowed. So to remove this incentive there is a need to change the consultant contract so that they can only work for the NHS organisation that they are contracted to. I doubt if such a change will ever happen, so an alternative would be to say that all income from private patients treated in an NHS organisation should be treated as income of the trust. This will ensure that the consultant is still an NHS consultant regardless of whether the patient is private or NHS. The intention of this rule will be to persuade consultants to treat their private patients in a private hospital, and hence prevent the creation of a two tier NHS.

Normal

The aim of every clinician is to make each patient with a long term condition as "normal" as possible. The definition of "normal" depends on the clinician, but it should be as close to the patient's definition of "normal" as possible. If the patient feels they are living a "normal" life then the clinician has succeeded.

When I was first diagnosed with type 1 diabetes, in 1976, I had a glass syringe and reusable needles stored in a plastic pot filled with ethanol, and two vials of bovine insulin. The routine was quite involved. Take out the syringe, push the plunger back and forth a few times to expel the alcohol, then attach the needle, pull the plunger back to the dose and, holding the syringe and vial upright, push the needle into the rubber stopper of the vial, and pump the dose equivalent of air into the vial; then draw out insulin, remove the needle, tap the syringe to get any bubble to rise to the needle end and gently push the plunger to expel the bubbles. Finally inject the insulin. It is not normal to do this in a restaurant, at school, or at a friend's house. This is not normal, so injections were kept to a minimum: twice a day at home. When insulin pens were introduced it became possible to be discreet about injections. It was possible to inject under the table at a restaurant, or nip to the toilet and inject. You could act "normal" while still doing something unusual - injecting in public.

Over my 39 year of type 1 diabetes I have been as "normal" as I can. I don't use my diabetes as an excuse. I try to be like my relatives, my friends and the people I work with, by doing the things they do and living like them. Indeed, it is not unusual for a friend to say "I didn't know you were diabetic". No, like you, I am normal.

The problem comes when clinicians try to turn normal people into patients. Recently, when talking to a GP at my local Clinical Commissioning Group about their new design for diabetes services I asked about the diabetes annual review. The GP told me that in his opinion a review annually was not often enough and he would like to see his diabetics four times a year. Four times a year: that's not normal, that would be changing me into a dependent patient. I don't want to be a patient, I want to be normal.

For 39 years I have collected my prescriptions four times a year and although that is enough of a chore, I have learned to put up with it because I know that without my insulin I won't be conscious for long. However, I have just found out that my GP will only issue repeat prescriptions monthly. That means twelve visits to the pharmacy every year. To a pharmacy that has opening times the same as most people's work time, and closes when most people have lunch. That is, the only time a normal person can collect a prescription is during work time. A normal person will have to take time off work to collect the prescription and this identifies them as not being "normal".

In the last 20 years or so, I have been able to be "normal" while still having diabetes. Now, it appears, I have not choice: I have to be a patient. I won't change without a fight. I am quite happy for my GP to send me four diabetic clinic appointments every year: that gives me a choice of which one I want to attend. And if my GP wants me to collect a prescription every month. Well, fine, instead of requesting my prescription electronically, I will collect the script from the surgery. Yes I do know that I will get in the way of the smooth flow of patients through reception, but it was you who decided to make me collect my prescription from reception every month.

And then there is the issue of the drugs I take. Half of them I take on faith. I take these drugs because my GP tells me to take them, but I know from the occasions that I have forgotten to take them that these drugs have no discernable effects on me. I have a big incentive to take insulin because if I miss an injection I start to feel ill within an hour or two. But I have no incentive to take the statins and the two hypertension drugs other than to make my GP happy*. Yet I will have to make monthly visits to the pharmacy to get these "on faith" drugs, drugs that I have no incentive to take. If I run out of statins, but I still have insulin in the fridge, why should I make an additional trip to the pharmacy? After all, since the statins and the hypertension drugs have no noticeable effects on me, if I don't take them I will still feel "normal".

[* I am diabetic, my GP gets a QOF payment based on my blood pressure and cholesterol blood tests. Although I have no incentive to take statins and hypertension drugs, there is a financial incentive for my GP to make sure that I do. This game of incentives may get interesting.]

CCG Pay Multiples

The Hutton review was set up in response to "public concern" (actually, Tory generated witch hunt) to the level of payments of public servants. The Hutton recommendation was that public bodies should publish the ratio between the salary of the highest paid staff member (usually a manager) to the median pay of all staff. Clearly the lower this ratio the more "equal" the organisation is.

While going through CCG annual accounts I have found quite a variation of the pay multiple, mostly because there is a large variation in the median pay (there's not much variation in the highest paid executives). However, some CCGs have made their declarations look like the pay multiple is lower than it actually is. Whether this is a genuine mistake or not, the results are clearly misleading.

As an example, here are the calculations for NHS Fareham and Gosport CCG. The section on pay multiples says this:

"The banded remuneration of the highest paid director in the CCG in the financial year 2013/14 was £85 - £90k. This was 2.1 times the median remuneration of the workforce, which was £40- £45k."

When I read this I thought three things. First, £45k is about normal for the median; second, 2.1 is low for the pay multiple; and third, £90k is low for an executive who handles many hundreds of millions of public money. So I decided to do the calculations myself.

The remuneration for their governing board looks like this.

I have edited this table to show only the highest paid staff and to remove the columns that list bonuses (zero), taxable benefits and pensions. The figures are as they appear in the CCG's annual report.

Clearly the "highest paid director" is Dr Chivers, the Chair of the CCG. (A figure of £85k is quite high for the Chair of a CCG, but not unusual.)) But note the right hand column. This lists the amount of time the manager spends working for the CCG. These are not part time jobs because the asterix indicates that these managers work for South Eastern Hampshire CCG or Portsmouth CCG as well as Fareham & Gosport.

The NHS England guide to calculate pay multiples says

"The calculation is based on the full-time equivalent staff of the clinical commissioning group at the reporting period end date on an annualised basis and is subject to audit."

So the salary is an FTE and annualised. Clearly this is so, because it makes no sense to compare a part time job with the median of FTE jobs. However, this is what Fareham & Gosport have done because they have ignored the staff that are shared with other CCGs.

The highest paid executive is actually Richard Samuel, the Accountable Officer; it is usually the case that the Accountable Officer is the highest paid executive. Mr Samuel is paid £65-70k by Fareham & Gosport CCG and another £65-70k by South Eastern Hampshire CCG (say £130-140k, a median of £135k). Using the median pay as £42.5k, the pay multiple should be 3.18, not 2.1. 3.18 is not exceptionally high for a pay multiple (I have seen values of around 7), but it is clearly a more honest figure than 2.1.

For the record, the pay multiple for NHS South Eastern Hampshire CCG is quoted as 3.2, but this has not been calculated from Mr Samuel's salary. This reason for the higher value is because: firstly, the median pay is lower (£35-40k); and, secondly, the other staff are paid much higher than Fareham & Gosport. SE Hampshire have a GP on the board, Dr Andrew Douglas, who is described as a "clinical member" (no, not even the chair) who is paid £120-125k.

The whole point of quoting a "pay multiple" is to try to show that the CCG's salary policy is "fair". But tricks like this make CCGs look like they are deliberately trying to mislead.

Participation

We had got ourselves a bit of a reputation, but this chap clearly wasn't aware of it. As usual the administrator, Sarah, had arranged a senior manager to give us a talk, and David had turned up with his laptop and powerpoint and relaxed into his presentation. We were a polite lot, we let David work his way through the first ten minutes of the professional-looking slides, and the script, clearly prepared by a team of people.

Then it happened. Jonathon said "But..."

A wry smile drew across the faces of everyone there, we all knew that someone would interrupt the manager from the distant big office, and we knew that the most likely person was Jonathon. Actually, if I am honest, we knew it would be Jonathon because it always was him. He was polite, concise and asked pertinent questions that would make a manager stop and think, so he was the ideal person to ask the first question.

"But what you say on that slide is not 100 percent correct. I use that service and I know that two times out of ten it will fail."

David stopped. The look on his face was puzzlement: someone had interrupted his talk. In years of being a senior manager, no one ever interrupted his talks, he didn't quite know how to react.

There were thirty of us in the room and he knew that everyone there was regarded as being a 'critical friend', people who wanted the service improved. And that was his intention too. He was used to giving presentations to employees, who, careful of their future career, would never interrupt someone as senior as him. None of us were employees, but we weren't 'the public' either since we had been invited to these regular meetings as people who were part of the community and thus closer to the service. The look on his face changed as he made up his mind that engaging with Jonathon was the best course of action.

"Going forward we will ensure that the service will succeed in ten times out of ten..."

A valiant try from someone not used to engaging with the public, but it was rather poor and Jonathon would have nothing to do with it.

"But", continued Jonathon, "I can assure you that it will not improve if you do what you say in the slides, and I can explain why..."

The room was quiet, waiting for the response.

It came, and this time David chose the right thing to do, he took out a notepad from his jacket pocket and asked Jonathon to explain why the service failed in a fifth of cases. After the quick explanation, David realised that Jonathon knew what he was talking about, and - concerning for him - the failures were real and no one had ever told him about them. David wrote down the details, telling Jonathon that he would get 'someone on my team' to look at the issue once he had returned back to his office.

The management spell had been broken. David was talking with us, not at us. To his credit, David recognised that as a group we had an experience of the service that no one on his team had, and he was listening to us because he knew that he would learn from us.

As soon as Jonathon had finished Peter started talking. He too had an issue with the service, and showed that he was knowledgeable and knew what needed to change to fix the issue. As with Jonathon's issue, David had not come across Peter's issue, and he scribbled more in his notebook.

It was clear now that the slides had been abandoned, and the rest of the hour long presentation was a two way conversation between David and the group. There were a long list of questions. Sometimes David would answer them, but mostly the direction of travel of information was from the group via David and his notebook to his 'team'.

After the presentation was finished we paused for a break to have coffee. I went to talk to David.

"What do you think our group?"

It was clear to me that he was looking a bit tired, but relaxed.

"It was tough. I have never had a session like that before. Do you do that to everyone?"

I smiled, "Yes, everyone, it's why we are here".

He laughed. "You are very difficult to please. I don't usually get this level of detail from my team, I didn't know there were these issues with our service. It was a great session, I really enjoyed it. I will definitely come back and next time I will be able to tell you that those problems have been fixed."

This all happened, though the names have been changed (well, not Jonathon's, everyone who knows him will recognise him from this story).

Now you are thinking about which of the patient participation groups that I attend I am describing, and when this happened.

It is not a patient participation group, it is a Microsoft user group and it happened a decade ago. For a decade from 1996 to 2006 I was involved with Microsoft user groups, mostly helping software developers use Microsoft's tools and libraries. I was not paid to do this, it was peer-to-peer support. I would answer people's questions on newsgroups and forums, and I would ask my own. Since I tended to answer more questions than I asked, and the quality of my help was good, Microsoft decided that I was a "community leader" and invited me to attend these user groups every quarter at Microsoft's regional headquarters in Reading. The manager I mentioned above was from Redmond, and yes he did return and he had ensured that the issues were fixed. In return we gave him a whole pile of additional issues to fix.

My involvement with Microsoft meant that I was asked to beta test most of their products, but the involvement went further. I was also asked to do alpha testing (very early version of products while they were being developed, and often before it was even publicly known that Microsoft was working on the product). However, the most useful part of this relationship was having access to the product team. On regular occasions I was invited (and my travel and hotel expenses paid) to visit the product team, usually in Redmond, to review the design of the next version of the product. I got to see the product on the "drawing board" years before the product would appear. Of course there were Non-disclosure Agreements (NDAs), but even so, I was not an employee, I was totally independent of Microsoft and I could say what I wanted. And I did. I was chosen to be there because I was a user, I knew what the product should do, and because of my involvement with "the community", I knew what other users of the product wanted.

This is how I expected NHS Patient Participation to work. Sadly, it is a million miles away. Most of NHS Patient Participation is a tick box: the CCG invite patients to a meeting, tell them what they are going to do and then tick the box marked "patient involvement". We are involved because, right at the end of changing a service, we have been told that the service is to be changed. This is not how it should be. Patients should be, but are not invited to be part of the commissioners' meetings when designing a service.

Patients are held at arm's length by commissioners, it is as if commissioners do not trust patients to know about the services they use. In the few meetings I am invited to I feel like I am a "guest": everyone there is polite to me, but I rarely feel that the meeting has any influence over the service involved, or that any of my concerns are noted. I find that when a patient raises issues about a service, the first reaction from commissioners is to be defensive and to blame someone else, usually the local hospital (now that CCGs are GP-led, there can never be an issue with primary care). I rarely find a commissioner reply to me that the service is poor and would be changed in response to my comments.

And then there are areas of the NHS where patient involvement appears to be forbidden. You know who I am talking about, NHS England and Local Authorities.

Primary care, GPs, dentists, opticians, pharmacies, very local patient services, are commissioned at a large population level in aloof and distant offices with no patient involvement by NHS England Area Teams. Does the Area Team know whether there are enough GPs in a town? They certainly don't bother to ask the patients who use the existing GP practices. Most GP practices have a patient participation group (PPG) where patients have joined specifically to improve the practice's services, but NHS England never consult these groups. That they choose not to consult GP PPGs shows that NHS England have a contempt for patient participation.

Now (in a bizarrely ill thought out decision) "public health" has been transferred to local councils. To be clear, I am happy for "healthy living" services - smoking cessation, health eating and campaigns to lose weight - to be transferred to local authorities. But for odd historical reasons, some healthcare services were classified as "public health" and these have been transferred out of the NHS, where they belong, to local authorities. For example sexual health services, school nurses and health visitors. Local authorities don't do patient participation, so by re-classifying a former NHS service as "public health" politicians have removed a legal requirement to involve the public in their commissioning.

The NHS has a lot to learn about patient involvement. It could learn a lot from how user groups provide peer-to-peer support and how they feedback to the companies providing the products they use. The current version of patient participation does not work. I have never been told that my comments about a service will result in a change in an existing service, and I have never been invited to be part of the team designing a service that I will use as a patient. Indeed, and more concerning, I have specifically been told that I cannot attend such meetings. I know that it will make some people wince, but the NHS could learn a lot from Microsoft.

Been there, done that!

This blog from a type 1 diabetic about losing her insulin while in the US reminded me of my own experiences. Here's the comment I left on that site (just in case it does not get past moderation).

I live in the UK and for five years I used to speak at US conferences four or five times a year. My T1D was usually not an issue, although there were a few issues - like security at Birmingham International telling me I had to put my insulin in the cargo hold and me demanding the airline book me an ambulance at Chicago because I would arrive "unconscious" without my insulin (OK, a bit over the top, but they "made an exception" for me).

On one occasion I was a bit lax. I had enough insulin for the trip, but on the way back the transatlantic plane was delayed and I had to stay overnight in a hotel. I needed to change the basal insulin in my pen and I did it in the bathroom. (Lesson: don't change cartridges in the bathroom, the floor is hard). I dropped the cartridge and it broke. This was my 'spare' (I was in the US for one day more than I had planned).

What to do? If you are a clinician, do not read on.

I had the same dilemma mentioned in the blog, except my only option was #3 - find a doctor and get a prescription. However, this was 1 am, so the choice of doctor and pharmacy was limited. I didn't want the option of spending hours and hundreds of dollars that it would cost. I had travel insurance, but the administration involved in getting the refund was far too much. Anyway, I had also spent a day travelling, I was tired from a week's work at a conference, and wanted to go to bed.

So I got a spare disposable syringe and sucked as much insulin as I could out of the smashed cartridge. (Lesson: carry disposable syringes, you never know when you'll need one.) There was enough for that injection. But what about the plane trip home? Usually, to take into account time zones, I would inject a half dose half way across the Atlantic. There wasn't enough remaining insulin in the smashed cartridge for that.

However, while travelling I had got into a habit when changing cartridge of putting the spent cartridge in my wash bag to dispose of at home. Except I didn't remember to dispose of the cartridges at home, so there was quite a collection in my wash bag. So I had spent basal cartridges from this trip, and from other trips in my wash bag. In each was a little bit of insulin and, with the syringe, I was able to draw out enough for the half dose on the plane. The insulin was old, and not stored at a cold temperature, but in that situation, any insulin was better than none.

I Want Personalisation Not a PHB

I have multiple long term conditions, one of which is hypothyroidism - my thyroid does not produce enough thyroxine and I have to take a replacement dose in tablet form. I take 175 micrograms in three pills 100mcg, 50mcg and 25mcg:

From the bottom upwards the dose increases, doubling each time. There is a clear danger here, while I know that the smaller strip is 100mcg, it is easy for me to mistake the 50 for the 25. Overdosing on thyroxine can have detrimental effects on the heart.

When I open a new box of pills, I personalise it:

Clearly, the best solution would be for the manufacture to print the dose in big numbers on the front (as opposed to the current situation of printing it in tiny numbers on the low contrast back).

Will a personal health budget deliver this? No.

Firstly, personal health budgets (at the moment) do not apply to medicines. This is a bit silly since people who have a PHB cannot use the money to pay their prescription charges. Yes, that's right, people can spend a PHB on reiki or some other nonsense that does not work, but they will not be allowed to spend their PHB on the government imposed sickness tax that is called prescription charges. As PHBs are rolled out to more people we will see cases where people will not take their prescribed medicines because of the cost of prescription charges, but will be able to buy ineffective "alternative" medicine with their PHB. Madness.

Secondly, and most importantly, I am an individual and drug companies do not listen to me. Giving me a PHB will not make the drug companies any more likely to listen to me. Indeed, the only way that the drug company will take any notice is if I accidentally take an overdose and die - at that point they may consider changing their packaging, if my death can be attributed to it. However, the drug companies will listen to the NHS, since the NHS represents a market of 50 million people in England. So if the NHS wants drug doses printed on the front of blister pack strips, it would happen.

People who have PHBs are effectively removing themselves from the NHS since they are purchasing healthcare rather than the NHS purchasing healthcare for them. In this example, under the current rules, medicines will still be NHS responsibility, but nevertheless the same principle applies: a PHB turns patients from part of the collective NHS into isolated individuals with less influence.

I really do want personalisation, but a personal health budget will not give it to me.

NHS Mutual Privatisations

The Coalition’s White Paper on the NHS in 2010 had this to say about the future of NHS Trusts and Foundation Trusts (section 4.21):

As all NHS trusts become foundation trusts, staff will have an opportunity to transform their organisations into employee-led social enterprises that they themselves control, freeing them to use their front-line experience to structure services around what works best for patients. For many foundation trusts, a governance model involving staff, the public and patients works well but we recognise that this may not be the best model for all types of foundation trust, particularly smaller organisations such as those providing community services. We will consult on future requirements: we envisage that some foundation trusts will be led only by employees; others will have wider memberships. The benefits of this approach will be seen in high productivity, greater innovation, better care and greater job satisfaction. Foundation trusts will not be privatised. 

The government clearly intended for most Foundation Trusts to be “employee-led social enterprises” in other words, no longer state owned, but instead, become not-for-profit private businesses. The statement at the end that “Foundation trusts will not be privatised” is contradictory since if a state-owned organisation is taken out of state ownership and into private ownership (as social enterprises are) then this is privatisation. Although the clause mentions "social enterprises" the same statements hold for mutuals. Mutuals are not state owned, they are in private (if mutual) ownership.

The government received 6,000 responses to the White Paper and summarised these responses in a paper called “Legislation Framework and Next Steps”. Section 6.16 in this document comments on the plan to turn hospitals into “social enterprises”:

Regulating healthcare providers discussed the prospect of enabling FTs to have employee-only memberships. Not many respondents commented on this proposal but, with some exceptions, those that did were generally not supportive. The CQC said that staff-only models without patient and public involvement could be at odds with public accountability and should be avoided, while the BMA thought they would do nothing to improve patient care. The Government has considered these concerns and concluded that staff-only membership would not be compatible with the foundation trust model. 

The comments from CQC and the BMA are relevant not only for the government’s then plans for NHS hospitals, but also for social enterprises in general: there is no public accountability and the model does not necessarily result in better care. The final comment appeared to dismiss all possibilities of Foundation Trusts being taken out of public ownership. The policy was killed off.

A few weeks ago George Osborne made a curious and worrying announcement reported in the Daily Telegraph.

Ministers are drawing up radical measures, to be announced in George Osborne’s Autumn Statement, which will see widespread privatisations and at least one million public sector workers removed from the government payroll by the end of the decade. 

The Telegraph, slathering in its small-state dotage, misinterpreted what this statement meant, they thought the government would simply sack public sector workers:

Ministers have been told that the government workforce will fall by about one million between 2011 and 2019. At a rate of 36,000 per quarter, this is the equivalent of sacking one state employee every four minutes, every day, for the next five years. 

When you “sack a state employee” there is a good chance that at the same time you are increasing unemployment, and no government can survive on five years of increasing unemployment.

According to ONS there are 5.4 million people employed in the public sector (or 17.7% of the workforce). We have to be careful about what this figure means, because since 2008 it has included the workforce of the banks that were nationalised. These banks are only temporarily in public ownership, and anyway, they can hardly be regarded as providing a social good, in contrast to the NHS and education. Regardless of this issue, a cut of one million would be a fifth of all public sector workers. ONS provides a breakdown of this figure:

In March 2014 there are 1.6m people in the NHS, 1.5m in education and 1.1m in public administration (councils). Removing a million people from these figures will be ambitious and the resulting rise of unemployment figures would be catastrophic for any government.  The plan is clearly not to sack public sector employees, so what is Osborne planning?

If we go back to the first quote from the Telegraph there is a huge clue about what Osborne intends:

will see widespread privatisations and at least one million public sector workers removed from the government payroll 

The simplest way to reduce the “government payroll” is to privatise a service. In October 2013 the “government payroll” was reduced by 150,000 when the government privatised the Royal Mail. The problem for the government is that the majority of the public sector is in politically sensitive areas like the NHS and education: privatisations in these sectors can only be done piecemeal and is unlikely to yield the promise cut of a million jobs.

There is another issue to consider. The following graph is from Duncan Weldon, the Economics Editor of Newsnight:

(I have shifted the axes a little – specifically, the y axis starts at 10% not 0% in the original – so that the graph takes less space.) Duncan makes no comment other than the graph is interesting and he wondered “if the lines will eventually cross?”. The graph shows that the public sector workforce has reduced consistently since Q3 2009 and self employment has increased since at least Q4 2002. There is some connection between the two lines. The Coalition have cut the number of NHS managers since 2010, but it has appeared that many of those manager have been re-employed as self-employed “consultants”! The effect of the government's "sacking" of NHS managers was essentially to privatise them, turning a public sector employee into a private sector, cab-for-hire, "consultant".

So now let’s return back to the 2010 NHS White Paper. If a public service is turned into the more politically acceptable mutual or “social enterprise” then the people who work for the service are employed by the new organisation, not the public sector. (This is one reason why it is important to highlight these changes as privatisations, since the staff will no longer work in the public sector.) Osborne’s promised cut of one million public sector jobs can be achieved simply by turning public sector organisations into “social enterprises”.

Since the NHS White Paper was published the term “social enterprise” keeps cropping up when it comes to describing a Foundation Trust. This is naive, wrong and in some cases duplicitous. A Foundation Trust is owned by the taxpayer, just like an NHS Trusts: the clue is the bottom line of the annual accounts of both NHS Trusts and Foundation Trusts which lists a single figure that is the Taxpayers Equity. There is no difference in the ownership of NHS Trusts and Foundation Trusts. For this discussion, the only difference is that if an NHS Trust makes a surplus (that is, it spends less during the year than it receives in income) the surplus must be returned to the NHS (and ultimately, the government). If a Foundation Trust makes a surplus that money is retained by the trust and is used to provide healthcare. Some people claim that this is similar to social enterprises. It isn’t. However, the talk of Foundation Trusts being "social enterprises" persists, mostly because this is the eventual aim of policy makers.

The idea to turn NHS trusts into mutuals or “social enterprises” is a “policy zombie”: once you've killed it off it comes back to life a few years later. HSJ are now reporting that the Kings Fund are advising the Department of Health to re-introduce this idea.

Professor Ham says there should be an “option… for NHS trusts to become staff-led mutual… including trusts providing acute services”. He says another approach could see “emerging models of integrated care choosing to become mutuals where several organisations come together to create a joint venture to deliver services such as urgent care and care for older people”. The report says this should be voluntary for trusts. The DH has welcomed the report but HSJ understands it does not plan to respond by allowing NHS acute trusts to become mutuals. 

This plan appears not to be just the fantasy of Prof Ham, since HSJ reports

the DH is expected to identify around 10 organisations, including acute providers, to pilot greater engagement of staff. There will be £1m funding available for the initiative, jointly from the Cabinet Office and DH. The programme will begin this summer and last until spring next year. It is understood the DH will use the work to identify regulatory, legal and practical steps it could take to allow new ownership and governance models such as mutual in the future. 

Notice the phrase "practical steps it could take to allow new ownership". If you change the ownership of an organisation owned by the nation then this is privatisation.

The big sell off of the NHS will begin after the next election. Labour were keen on "public sector mutuals" in the last government and started the privatisation of Community Health Services into so-called "social enterprises". This process was halted when the current government tried to privatise Community Health Services in Gloucestershire and the plan was halted after a judicial review. The big question is, will Labour support the public sector and kill off Ham's zombie fantasy?

Why John Rentoul is Wrong

Yet again John Rentoul is wrong.

In today's Independent John Rentoul describes an electoral scenario that he describes as "shocking", "alarming" and "one of the least attractive" electoral outcomes. While I agree with these statements (for purely polemic reasons, they suggest yet another coalition), I disagree with his naive arguments. Rentoul says that the situation will lead to "the Liberal Democrats might have even more of an influence on government than they have at the moment". I disagree, the result will be a short-lived and unstable government.

Let's look at the 2010 election results. These figures have changed a little bit since 2010, but not so much as to make any difference, I will use them because they describe the situation in 2010, rather than now.

Cons 306
Lab 258
LD 57
Others 28

Assuming that the five Sinn Féin MPs (included in Others) do not participate this means a majority coalition requires 323 MPs. For the Tories to get a majority of 323 out of these figures they needed 17 more votes.

The Coalition works because the Lib Dems provide 57 extra votes, right? Not necessarily. Over the last four years Lib Dems have voted against government bills, so the Coalition cannot rely on all of those 57 Lib Dem MPs (nor all the Tory MPs, but that is another story...). What if the Tory-majority government brings in a bill that goes against everything that the Lib Dems stand for, will the Coalition still have those 57 votes? No, but even so, the government (assuming it has the votes of all Tory MPs) will still have a majority. The reason is the "payroll vote".

The payroll vote are those MPs who hold government posts. These vary between paid ministerial positions to unpaid posts like chairing important parliamentary committees. If we just restrict ourselves to the paid positions, here are the figures from 2010:

Cabinet members (23); 18 Tory; 5 Lib Dem
6 Tories ministers also attend

Minister of State (32); 26 Tory; 6 Lib Dem

Parliamentary Under Secretary of State (33); 28 Tory; 5 Lib Dem

Whips (non-cabinet 5); 3 Tory; 2 Lib Dem

All of these people will always vote for the government. This is a guaranteed 93 votes for any government bill (88 ministers and 5 whips). Eighteen of these people are Lib Dem. So if the Coalition brings in a Bill that will turn the stomach every Lib Dem the vote will pass because eighteen Lib Dems are on the payroll and will always vote for the government.

Why are eighteen of the 88 ministers Lib Dems? This is because the Lib Dems have 16% of the Coalition MPs (57 out of 363) and hence have to have at least 16% of the ministerial positions. 16% of 88 is fifteen, rounding up judiciously. Since there are sixteen Lib Dem ministers it means Lib Dems are over represented in government, but this is advantageous because it guarantees the Coalition a majority. (Fifteen plus the five whips still gives a figure above that magical seventeen majority, but only just, hence the need to have an additional three guaranteed Lib Dem votes.)

Now onto why John Rentoul is wrong. He quotes a "prediction" that at the next election the breakdown will be:

Cons 295
Lab 296
LD 31
Others 28

Rentoul says that this will make the Lib Dems much more powerful than they are now. It won't, all it will do is create an unstable government and make a new election much more likely.

To get a 323 majority one or the other of the two large parties would have to find 27 or 28 votes. They cannot get these from the Lib Dems because they cannot guarantee that all Lib Dems will vote for the resulting coalition. Let's assume that Labour form the next coalition. This will mean that 9% of the coalition's 327 MPs will be Lib Dem hence 9% of the payroll vote, or eight MPs. Add this to the whips votes and the Labour-led coalition will have 309 votes, well short of the 323 needed. Essentially, this will be a minority government, not much different to what we would have now if the Lib Dems pulled out of the Coalition. It would be unstable.

So Rentoul is wrong to say that "the Liberal Democrats might have even more of an influence on government than they have at the moment" since that government will be short-lived and probably will achieve nothing for the Lib Dems to influence.

Name and Shame and Patient Choice of GP Practices

Jeremy Hunt's latest announcement is that GPs should be "named and shamed" for poor cancer referral rates. (The article is in the Mail on Sunday, I won't link to it here, but you can find it through an internet search.)

"Under the Government’s planned reforms, surgeries will be ranked as ‘green’ for cancer on the NHS Choices website if they quickly refer patients to hospital when they are showing possible signs of cancer. But if they miss too many cancer cases – or if patients have to return numerous times before being sent for tests – they will be classed as ‘red’."

This plan has been criticised by doctors,

"the Royal College of GPs has criticised the proposed rating system as ‘crude’ and said the Government should be ‘supporting GPs, not criticising them’"

This sentiment was repeated on BBC Broadcasting House on Radio 4 by Dr Sarah Wollaston, Chair of the Health Select Committee and a GP. Dr Wollaston said that the policy could lead to over-referral which would "clog up the system".

There are other reasons to reject this idea. Over-referrals are bad for patients because they cause anxiety to "false positive" patients, cause unnecessary tests and potentially damaging interventions.

The announcement also doesn't recognise that cancer is more effectively beaten with improved public health.

The whole "naming and shaming" idea is flawed. At present GP patient lists are geographically based, and while there is some choice at the boundaries, most patients are registered at the practice in the area where they live. It is well known that this ideologically-driven government want to change this.

What happens when the cancer diagnosis rankings appear on the NHS Choices website and a patient finds that their practice is 'red' rated? Hunt's gut feeling is that the patient will move to another practice with a better rating, and this "market" behaviour will improve incentives and quality. However, under current situation, this will not happen because changing practices is not a simple thing for patients to do. A 'red' rating will cause unnecessary anxiety amongst a community who will have no choice other than the practice badly rated (even though it may well be unwarranted). So why has Hunt come up with this policy?

In the 2010 Health White Paper the government said:

"Give every patient a clear right to choose to register with any GP practice they want with an open list, without being restricted by where they live. People should be able to expect that they can change their GP quickly and straightforwardly if and when it is right for them, but equally that they can stay with their GP if they wish when they move house."

So what has happened to this policy? The results are mixed. The BBC, as ever acting as the mouthpiece for the Department of Health says:

"The lead author, Prof Nicholas Mays, said: "While demand for the pilot was modest, our evaluation found that patients had positive views of the scheme."

However, Pulse Magazine, the trade magazine for primary care, is less enthusiastic:

"The long-awaited report into pilot sites concluded that, despite positive feedback from users, there was little demand from patients or practices and called on the Government to consider alternatives to support increased access."

Pulse reported figures from the study that the BBC chose to ignore: "More than a third of the practices taking part in the Government’s ‘choice of GP practice’ pilots failed to register a single patient from outside their area". This is hardly the "modest demand" that the BBC reported, it is a wholesale rejection of the idea.

There are good reasons why this idea should be rejected. Pulse says of the study:

"It also found that commissioners had big concerns about the potential destabilisation of general practice and impact on the wider health service if it was to be rolled out nationally."

Commissioners are under immense pressure at the moment to meet increasing demands due to an aging population, government diktats about integration and moving care out of hospitals, while at the same time having to meet unachievable targets to reduce A&E attendances. All of this must be done with a budget that is static and inadequate. The last thing they need is one more destabilising policy.

The "choice of GP practice" pilot has shown that few people want to change practice, so it is possible that someone in the Department of Health has said: if there's no demand for this policy, why not create it? If a GP practice has been labeled "poor" at cancer diagnosis then there will be demand from some worried patients to change to a practice that has a good rating. Thus cancer diagnosis rating has a potential to create the demand for patients to practices.

It is not too far fetched to suggest that the whole point of Hunt's cancer rating announcement is to create the demand needed for the failed "choice of GP practice" policy.

UPDATE 23.00

Dr Clare Gerada tweeted the following at 21:36:

This puts another perspective on Hunt's cancer name & shame: cancer is rare and so the diagnosis rate of each GP is small. This means that it will be difficult for NHS Choices to come up with a criteria to use to determine when to give a "green" or a "red" flag. Going on this tweet, it seems that the cancer diagnosis rating flag will be a non-starter.

Self-care "Payment by Results"

For forty years I have had regular doctors' appointments for my diabetes. This has been mostly with hospital doctors, but from about the mid 90s it was GP diabetic clinic appointments too. For the first thirty years they all had the same format: blood results, told to do better, given form for the next blood test, dismissed. Years after I had taken my last exam, every six months I would be given a test, fail it and then be chided for not trying harder. I would always leave those appointments angry. My blood tests were not bad, they were simply not perfect; and it wasn't that I was not taking responsibility for my condition, I was, I just had a busy life and sometimes I could not understand why I had high results or how to get them lower.

Then about ten years ago, for some reason, my diabetic appointments changed from a personal test of my responsibility to a conversation with my doctor. No longer were my non-perfect results treated as a personal failure, and entirely my responsibility. Now the doctor was interested in how I could be helped to understand my results and improve them. The doctor no longer looked down on me as a problem, but instead treated me as part of the solution. This is Shared Decision Making.

Today the right wing organisation, 2020Health have come up with an idea that the rate of tax I pay should depend on my blood sugar.

We propose ‘Payment by Results’, a financial reward for people who become active partners in their health, whereby if you e.g. keep your blood sugar levels down, quit smoking, keep weight off, take on more self-care there will be a tax rebate or an end of year bonus. This could be monitored by the GP, linked to QUOF or facilitated by electronic patient records.

(I have no idea what QUOF is. Are they referring to the Quality and Outcomes Framework that is usually initialised to QOF?)

So now, the very person who I hold in my deepest confidence - my GP - will be determining my tax bill. Does this make sense?

We know that type 2 diabetes is associated with deprivation, National Diabetes Audit 2009-10 says "Type 2 diabetes is strongly associated with age, ethnicity and social deprivation":

The prevalence of Type 2 diabetes rose from 3.18 per cent in the least deprived quintile (Q1) to 4.49 per cent in the most deprived quintile (Q5). Furthermore, the effect of deprivation on the prevalence of Type 2 diabetes is most pronounced in the 16 to 55 years age range (Table 2). In those aged 70 years and over, similar numbers of Q1 (12.1 per cent) and Q5 (14.8 per cent) have Type 2 diabetes, but under the age of 55 Type 2 diabetes is more than twice as common in Q5 (3.0 per cent) as Q1 (1.3 per cent). This may reflect lifestyle differences in exercise, diet and weight.

Because there are more type 2 diabetics in the most deprived areas, this means that the 2020Health's "Payment by Results" will be applied to the poor, who are least able to afford a healthcare plan that has a financial basis, rather than the rich. Further, after the debacle of the care.data programme, where Tim Kelsey will be selling your GP medical records to insurance companies, we now have an equally abhorrent idea that your "electronic patient records" will be made available to HMRC. When will these right wingers realise that our confidential medical records should remain confidential?

Finally, it is worth quoting Dr Phil Hammond's reaction to this report:

Real Personalisation Will Never Happen

I really get sick of a small minority of people with vested commercial interests saying that personal healthcare budgets (PHBs) delivers "personalisation". I am sick of it because they don't seem to understand what personalisation is. Such people insist that by turning patients into consumers will personalise their care. It won't, it just turns them into consumers with the responsibilities and worries that come with spending budgets carefully.

Let me give you an example of where we need personalisation, where PHBs will not deliver this personalisation, and a subject which commissioners obsessed with their version of "personalisation" have shown no interest. Prescription medications.

I have three long term conditions and so I take seven different drugs. Since one of those drugs is not available in the dose I take, I take three pills of it. That means I take five pills in the morning, two before I go to bed (the other medication I take is two types of insulin). That is a small number of pills compared to many elderly people. I am middle aged, with relatively good eyesight (OK I have diabetic retinopathy, so that increases my count of long term conditions to four). I have good co-ordination and memory. Yet I still forget to take medication. Sometimes I get to the end of the fortnight and realise that there is one pill left over in the blister pack, so clearly I had missed that pill sometime during the last 14 days, with no idea when.

My pharmacist knows what drugs I take, it's on my prescription script and she attaches a label telling me when to take them. Instead of me having blister packs for seven drugs, why not blister packs for the seven days in the week? Half of the strip for morning, half for evening. It's Tuesday, so I take the strip that is marked (IN BIG BOLD LETTERS) Tuesday. I do not have to go hunting for the right blister pack for the right drug, because that has been done by the pharmacist already.

That strip of pills can only be used by me, because no one else has my combination of long term conditions requiring exactly those doses. This is real personalisation and it will never happen.

What I would have said

Norman Lamb was on BBC Radio 4 Any Questions last night. The things he said about the NHS made me decide to call Any Answers today to refute his assertions. I called their number and spoke to a researcher who noted my response and said she would pass it on to a producer. I was then called back by a producer who checked my details but warned me that there was unlikely to be the time to discuss the NHS on this edition. She was right, the public apparently are more interested in a fiddling minister, an English Parliament or the middle class habit of taking kids on holiday in term time than the NHS.

This is what I told the researcher, and I would have said on air.

I am calling to refute the statement from Norman Lamb that the NHS is "horribly fragmented" and that his government is moving to a "joined up system". The effect of Norman Lamb's government's policies are that we are going in the opposite direction, the system getting more fragmented, not more integrated as Lamb claimed.

I have had diabetes for 40 years and for the last 20 years I have had diabetic eye disease - retinopathy. I use diabetic services in my local hospital, I use services at their eye clinic and I use GP diabetic services. Before the election all three services were commissioned by one commissioner, the local Primary Care Trust. The commissioner plans a service and ensures that patients are able to access the service, and since there was one commissioner this meant that they could decide which services were carried out in hospital and which were provided by GPs.

Since the Health and Social Care Act was enacted last April my care is commissioned by three different commissioners. The local Clinical Commissioning Group commission diabetic hospital services, the NHS England Area Team commission GP services and Public Health England commission the monitoring of my diabetic eye disease. Three different commissioners instead of one. Norman Lamb talked about "treating the whole person" but his policies have made that more difficult because there are three commissioners instead of one. I know where the CCG is located because the CCG are high profile, the other two organisations are not. I have only just found out that the NHS England Area Team who commission GP services are based 40 miles away from where I live and they commission GP services for 1.6 million people. GP are a thoroughly local service but are now commissioned by a remote and aloof organisation. I still do not know where Public Health England are based, they keep themselves to themselves.

These three commissioners do not work together. I know this because my local CCG have announced that they intend to cut the number of hospital diabetic outpatients appointments by a third, but when I asked at their public board meeting if they will ensure that local GPs have the skills to care for these diabetics denied access to the hospital clinic, I was told: "we do not commission primary care". So the CCG are allowed to decommission services at the local hospital without first ensuring that local GPs will be able to care for the patients from the cut service. If the PCT had decided they wanted to move services out of the hospital they would have been able to do this because they commissioned both hospital services and primary care.

The result of the mess of my care being commissioned by three different organisations who do not talk to each other is that NHS services are becoming far more fragmented.

Sweet Tea and Diabetic Wee

Thirty eight years ago, aged eleven, I was discharged after a week in hospital. I was sent home with a glass syringe, a plastic tub and a bottle of surgical spirit to store the syringe, five reusable needles (a year's supply), a couple of bottles of insulin and a chemistry set.

I had been diagnosed with juvenile onset diabetes, later called insulin dependent diabetes and now known as type 1 diabetes. Simply put, my body had ceased to make any insulin and so I could no longer control my blood sugar. The treatment was to inject insulin refined from the pancreases of cows. The chemistry set was so that I could determine whether I was injecting the right amount of insulin. It contained a test tube, an eye dropper and a bottle of tablets containing caustic soda and copper sulphate. Five drops of urine, ten drops of water, then drop a tablet in the tube and wait 30 seconds while it fizzed and turned the liquid a colour between blue (no sugar: good) and bright orange (2% sugar: bad). The value was recorded in a notebook to show the consultant at the six monthly appointments. Although it is almost forty years ago, I remember my book was littered with 1% and 2% readings.

Just think about this: regularly, 2% of my urine was sugar. If a teaspoon holds about 4g of sugar, and a mug of tea is about 200ml, a mug of tea with a teaspoon of sugar is about 2% sugar. On a regular basis, my urine was as sweet as your tea*. (Diabetes mellitus comes from the Greek word diabetes meaning siphon - to pass through - and the Latin word mellitus meaning honeyed or sweet, in other words sweet urine.)

To get that sweet, empirical measurements show that on average my blood sugar would have to be about 12 mmol/l and this is about double the recommended level for a diabetic. The urine tests gave results up to 2%, so when I got the bright orange result it mean that the concentration of sugar in my urine was 2% or more. Since the test didn't show a value higher than 2% I have no way of knowing how high my urine sugar really got. (In fact, I now know that I could have repeated the test with two drops of urine rather than five, and this could have measured up to 5% of sugar.) I was also prescribed urine dipsticks to test for ketones. Ketonuria occurs when the body breaks down amino acids to get energy rather than glucose, and in a diabetic this can occur when blood sugar is over 15 mmol/l (due to too little insulin). From memory, I occasionally detected ketones, so my blood sugar was likely to be three times or more the recommended level.

The problem with urine testing is that it is hours after the fact. My bladder could have several hours of urine (eight, for the early morning pee) and hence my blood sugar could be high for all of this time. Worse, four decades ago, there was not the concept of taking an adjustment dose of insulin to correct a bad result. Re-usable needles meant that injecting was an unbearable pain, and blunt needles (and the impure animal insulin) affected the injection sites (scarring and fat loss) so it was always best to have as few injections as possible. For the first ten years I had two injections a day: one before breakfast and another before dinner. Consequently, without an adjustment dose, a high urine test could mean a high blood sugar for at least half a day. Controlling blood sugar in the 70s and 80s was not easy.

These days diabetics have finger prick blood testing monitors, so we can instantaneously test blood sugar, we also have insulin pens that can accurately deliver small adjustment doses of insulin and (the most significant innovation) we have sharp needles. Controlling blood sugar, though easier, is still not easy because injected insulin does not act immediately, and (depending on the type of insulin) it may continue to affect blood sugar for a couple of hours. Further, some foods are digested quicker than others and hence affect blood sugar in different ways. Managing diabetes is always a case of finding out what works and then sticking with it. Change is the worst word in a diabetic's life.

In my next blog I will describe the issues with the controlling diabetes using finger-prick blood glucose tests, and what could be done to improve the situation.

[*] This is all very approximate, but figure 1 in this paper suggests that 2% Clinitest represents between 2.5g and 4.5g (say about 3g) in 100ml of urine, which means my urine was as sweet as one and a half teaspoons of sugar in a mug of tea.

Are You Involved?

Whose Patient Are You?

There really is just one type of patient: a patient. A patient is a person who is ill and needs care, simple as that. It could be elective or emergency care, but it is still care. It could be a single episode, or a lifetime of treatment for a long term condition, but it is still care. The patient is the receiver of care.

When pushed, I would set up a dividing line between NHS and private patients for the simple reason that private patients have made a conscious decision that they want to opt out, and are choosing not to be the same as everyone else. People who choose to have private care have the same rights to NHS care as the rest of us, but they choose - for a variety of reasons - not to exercise those rights. It is their choice, but they can opt back in any time they like. However, for the rest of us, private care is not an option, which is why it is so important to defend our access to the NHS and to get involved in the improvement of NHS care.

Thus, there are just two types of patients: private patients and NHS patients. This is pertinent to this blog because this is about public and patient involvement which is a concept unique to the NHS. The relationship private patients have with their healthcare provider is a simple customer-provider relationship, if you do not like the service you take your money to another provider. The relationship an NHS patient has with their healthcare provider is far more complicated than this. NHS patients do not have control of the money spent with providers and I would argue it is incredibly important that they don't. The reason is that providing good care is very different to providing a profitable service. Many NHS services cost more than the money provided, so "taking your money elsewhere" is often a case of "taking the deficit elsewhere".

Which Parts of the NHS Do You Use?

The NHS is often viewed by managers and politicians as primary, secondary and tertiary care, but from the patients perspective this is either GPs (primary care) or hospitals (secondary and tertiary care). There is also a dividing line between acute (or physical health) and mental health; and typically, if you have a mental health issue which results in hospitalising that will be in a mental health hospital even if you have a physical health condition that would otherwise mean that you should be in an acute hospital. In addition, there is a grey area within the NHS: community health services. As the name suggests these are services delivered in the community, in small clinics or in the patient's home. Community services are largely a historical relic of local authority involvement in healthcare before the establishment of the NHS. You could argue that community services are primary care that should be delivered by GPs, or alternatively, you could argue that they are step-down services of hospitals, and in some cases (like Continuing Healthcare) hospital services delivered in the patient's home. In some areas community services are delivered by acute hospital trusts, in others they are delivery by mental health trusts, and in others they are delivered by private companies.

To us patients, we need care from the NHS as a whole. We may have physical or mental issues, we may need episodic care or have a long term condition needing long term care. We may need the care in our homes, in a GP surgery, a community clinic or in a hospital. In all cases we are simply a patient. Treating us as a patient rather than a consumer of multiple services is the philosophy behind whole person care.

Getting Involved

Public and Patient Involvement (PPI) is a legal responsibility of NHS organisations. The Health and Social Care Act 2012 (HSCA) created two new commissioners, NHS England and Clinical Commissioning Groups (CCGs) and the Act created a responsibility for PPI for both (as outlined in this document by National Voices). Section 23 and section 26 of the Act, add section 13H and two sections 14U and 14Z2 to the NHS Act 2006 to place a duty of PPI on, respectively, NHS England (called "The Board" in the Act) and CCGs.

PPI is a legal requirement of NHS commissioners and there are requirements for NHS providers to have patient involvement too; private providers of NHS care do not have to have PPI and consequently do not.

An NHS England Patient?

NHS England commissions primary care (GPs, opticians, dentists, pharmacies), care for prisoners and military personnel. They also commission tertiary care and care for rare conditions. The HSCA places a duty for NHS England to "promote the involvement of patients, and their carers and representatives (if any)" in the decision making of "the prevention or diagnosis of illness in the patients" and "their care or treatment". NHS England has put some effort into the PPI for rare conditions but have been largely quiet about the much bigger issue of PPI in the commissioning of primary care. Primary care is commissioned on a regional basis by the so-called Area Teams. These rather shadowy groups do not hold meetings in public and their board papers are not published, so the public do not know what these groups are doing, nor able to challenge their decisions.

Logically, the Area Team should be recruiting patients through GPs, opticians, dentists and pharmacies because they commission the services patients use from these providers, but there is little evidence that Area Teams are doing this. If you want to be involved in the commissioning carried out by your Area Team there is little information about who to contact.

Shadowy is perhaps being too kind to them, the Area Teams seem to want to avoid the public entirely.

A Clinical Commissioning Group Patient?

Clinical Commissioning Groups commission secondary care (ie hospital care), mental health, GP out of hours services, urgent care services like ambulance and 111, and community services. CCGs are membership organisations in that every GP practice has to be a member of a CCG. (These GP members of CCGs are involved in their decision making, but unfortunately the so-called members councils emulate NHS England by meeting in secret and refusing to publish their minutes.)

The new section 14U that the HSCA adds to the 2006 NHS Act a duty to promote PPI on CCGs, and in addition it says that NHS England should publish guidance on how CCGs should do this. This statement appears to be the case of the tail wagging the dog: CCGs can tell NHS England a lot more about PPI than the other way around. The new section 14Z2 goes into more detail about the responsibilities of CCGs. This says that patients should be involved "in the planning of the commissioning arrangements" and in the "changes in the commissioning arrangements" of the CCG.

As part of their authorisation CCGs had to provide their PPI strategies to, and these be approved by the largely PPI-free NHS England. Consequently every CCG has some form of Patient Participation Group (PPG), and most of these are based upon the PPGs of their member GP practices.

A GP Practice Patient?

General Practices have had PPGs for many years. PPGs are paid for through Directed Enhanced Services (DES) (until the end of this financial year) so GPs are actually paid to provide them. Most practices take this money because they recognise the benefit that patient feedback from a PPG can provide. One requirement of the DES payments is the annual patient survey which practices can use, through locally determined questions, what patients want and how the practice can improve their facilities and services.

There is another distinct advantage that practices gain from having a PPG that GPs are only now starting to realise: CQC. If a practice is CQC inspected the first thing the inspector will ask is "can I talk with your PPG?". A negative response is not going to allow the rest of the inspection to go well, and, as practices are starting to learn, a friendly PPG can do wonders for their CQC rating.

Or A Foundation Trust Patient?

Foundation Trusts (FTs) are a special case because they are the only part of the NHS where there is elected patient representation. Foundation Trusts have a membership (usually opt-in for public and patient membership, but opt-out for staff membership). The membership elects governors to the FT's Council of Governors. More than half of the Council must be public or patient elected governors and the remainder of the Council are elected staff governors and stakeholder appointed governors. The public and patient elected governors represent the constituencies that elect them but the HSCA (section 151(4)) says that in general governors "represent the interests of the members of the corporation as a whole and the interests of the public" (the "corporation" here refers to Public Benefit Corporation which is the legal term for a Foundation Trust).

In general governors have a responsibility "to hold the non-executive directors individually and collectively to account for the performance of the board of directors". Foundation Trust Board of Directors meetings must be held in public (section 152(5)) however, as a public body it means that the Foundation Trust can use the Public Bodies (Admission to Meetings) Act 1960 to exclude the public (which includes governors) from parts of the Board meeting where it "would be prejudicial to the public interest by reason of the confidential nature". In spite of this, Foundation Trust governors have a right (section 152(4)) to have access to all Board minutes including the minutes of the confidential section of the Board from which they are excluded, so although governors cannot attend the confidential section, they can see what was said.

Other than the general responsibility to hold non-executive directors "to account for the performance of the board of directors", there are specific responsibilities. For example, if a Foundation Trust intends to increase its income from private patients by more than 5% of the total income of the trust (an event that is as a rare as finding a hen's tooth) more than half of the Council of Governors must approve. In addition, governors must inform the Board of Directors whether it is satisfied that treating private patients "will not to any significant extent interfere" with the treatment of NHS patients (section 164(3)). This last responsibility is fairly toothless because governors do not have any power to stop an FT from treating private patients.

The two most powerful powers of governors are to appoint and remove non-executive directors, and to determine whether significant transactions should go ahead. Governors appoint the non-executive directors (NEDs, including the Chair of the trust) and can remove them, governors also determine the pay of these directors. NEDs are members of of the Board of Directors, and board decisions are made collectively by all directors. NEDs do not have an operational role, they do not manage the trust, instead their role is to challenge the executive directors. NEDs also form the appointments committee that appoint, and determine the pay of the executive directors. Although the NEDs appoint and remove the chief executive, governors have to approve such decisions. Possibly the most powerful responsibility of governors is covered by the term significant transaction (section 167). The Foundation Trust can only enter into a significant transaction if more than half of governors approve. The Act does not define what a significant transaction is other than saying that they must be specified in the trust's constitution. Any changes to the constitution must be approved by Governors and the trust Board of Directors.

What About Private Providers?

The government says that there is a "fair playing field" when it comes to commissioning services, however, the one area where the playing field is not "fair" is where it comes to patient involvement and patient representation. There is no legislation that requires private providers to involve patients in the provision of the care they provide. There is no legislation that requires private providers to have public board meetings or publish their board minutes. If the provider is a charity or a social enterprise, they will have their own rules about patient involvement, however, usually such third sector providers behave as if they are private businesses when providing NHS commissioned services.

If you are offered an NHS service from a private provider bear in mind that no patient was involved in designing the service. No patient is involved in the continuing improvement of the service nor in holding the senior management to account for the service. As a patient you will not have an opportunity to be consulted about the provision of the service. All of this is worth bearing in mind before you consider using a private provider for your NHS care.

So What Sort Of Patient Are You?

If you want to get involved in the planning and delivery of NHS services, you have lots of opportunities. The problem is that the different parts of the NHS do PPI in different ways and some parts (particularly commissioners) define involvement as "help us performance manage those other people". When you combine this with the total lack of PPI in the private sector, it all adds up to a mess.

Patient involvement in improving services come from two perspectives: the provider and the commissioner. The commissioner designs the service and monitors delivery, patients can be involved in the designing of a service, and as the recipient of the service, they can be involved in feeding back how well the service is performing. Commissioners monitor services to enforce the contracts they have with the providers, most contracts have some kind of penalty or incentive and often patient feedback is involved in these. Contractually, providers clearly want to avoid the penalties and gain the incentives, so patient participation is important to them.

For example, patients join a GP practice PPG to help improve the services at the GP practice from a provider's perspective. GPs are mostly commissioned by NHS England Area Teams (there are a few GP services that CCGs commission) but the lack of PPI in Area Teams means that there is little commissioner patient involvement in improving GP services. It is very clear that patients join GP PPGs to improve GP services, if they want to improve hospital services the obvious route is to join a hospital PPG (or equivalent PPI). However, most CCGs draw from GP PPGs to form their own patient groups. CCGs do not provide services, and they do not commission GPs, so a patient who joined a PPG to be involved in the improvement of their GP services will find that they are asked by the CCG to improve services they originally did not volunteer to be involved with.

CCG patient participation groups are involved in the commissioning, and improving, of hospital services, mental health services, community services, urgent care services and out of hours through the commissioner-provider relationship. In other words, very few services that involve GPs.

Conflicts of Interest

Commissioners are quite open about that they will use the contract with the provider as a lever to improve services: threats of commissioning another provider, or moving the service to the free-for-all that is Any Qualified Provider. Collaboration has largely disappeared due to the recently introduced procurement regulations.

Gone are the days when the patient group of a provider could collaborate with commissioners to improve the service. The patients of a provider's PPG will have direct experience of the service and are a valuable resource: a patient involved with a public sector provider will have more experience about the service being commissioned than a patient who is not involved with the provider. Thus, it makes a lot of sense for a CCG to involve those patients in redesign of those services. Similarly, if a CCG wants to improve a service, the best course of action would be to consult the existing service provider, since that provider will be more of an expert about the delivery of the service than the commissioner. However, CCGs wary of litigation under the new procurement regulations are reluctant to seek advice from those providers and their patient groups because they may appear to be giving unfair competitive advantage to those providers. From a PPI perspective, if a CCG involves a patient in commissioning and that patient is a member of a PPI group at a provider, that could be regarded as being anti-competitive.

It works the other way around too: there is no incentive for an existing provider to help design services if those services will be put out to competitive tender with the possibility that the provider may not win the tender. The new procurement regulations are a barrier to the improvement of services.

CCGs are rather inconsistent in applying the strictures of the procurement regulations. CCGs can commission Locally Enhanced Services from GPs, and these may replace services formerly delivered in secondary care (so-called "move services to the community"). Since CCGs are membership organisations where the members are GP practices, CCGs have to take steps to prevent "conflict of interest" when awarding LES to member GPs. However, these steps are usually just for show. For example, the GP members of a governance board declining to take part in a vote that awards services to GPs when the decision has already been made out of the boardroom. This, we are told, is acceptable. Furthermore, if a CCG involves its patient group in commissioning LES there is a high chance that it will involve patients who are members of the PPGs of the GP practices who would benefit.

I Am Just A Patient!

Patients are patients, they are not your patient or our patient, they are NHS patients. It is quite clear that public and patient involvement is getting fragmented because of the new competition-based procurement regulations. Patients are excluded to prevent perceived "conflict of interests", while real conflicts are not being addressed. Patient involvement is vital to the NHS, not only does it give a legitimacy to the commissioning by a public organisation, but it has the potential to make significant improvements to the services being commissioned. No patient is restricted to one provider or one service, no patient pathway is limited like that, so why should patient involvement be limited?

Before the fragmentation of services and PPI gets much further we need to stop and rethink. Ultimately we need to remove competition from healthcare planning because it is resulting in competition lawyers determining which providers are commissioned. While we wait for that to happen, the next best thing would be a declaration from the Secretary of State that patients are far more important than competition laws and to tell commissioners that they cannot exclude patients from commissioning on the grounds of "conflict of interest". To ensure that such a declaration is followed, a neutral third party should have not only the responsibility to ensure that patient involvement occurs, but also to enforce it. Such a neutral third party should have the same power over all commissioners and providers: NHS England, NHS England Area Teams, CCGs, Local Authority social care commissioners, NHS providers, GPs and private providers.

At the moment there is no such patient organisation, but there is a possibility that local Healthwatch could be given new powers, responsibilities and resources to do this. Such a revitalised Healthwatch would be able to support patient groups so that they are independent of providers and commissioners, being able to discuss the issues that concern the patients. Healthwatch could be given the power to delay the commissioning of a service on the groups of inadequate patient involvement. It could also have the responsibility to ensure that all providers (NHS and private) have patient engagement and involvement in the delivery of services. Such power would give meaning to Healthwatch.

(Richard Blogger is an elected Foundation Trust governor and a patient representative at his local CCG PPG. He has been excluded from patient involvement in commissioning by the CCG on the grounds of "conflict of interests".)