"The NHS will last as long as there are folk left with the faith to fight for it"
Aneurin Bevan

Friday, 27 February 2015

DevoManc: Huge Centralisation of NHS Commissioning

One Health and Wellbeing Board to Rule Them All


The proposals, that are known as DevoManc, are huge, they promise lots and yet there are very little detail about how they will work. Labour should be very cautious about them.

The normal way to make huge changes to how we are governed is for a political party to put the proposals in their manifesto and ask the public to vote on it. Osborne has not done this, so it is legitimate to say it is not democratic and probably not constitutional. At the very least, since it will involve a lot of legislation, there should be a white paper on the DevoManc proposals so that there is a consultation process involving experts. This has not happened, which means that we have a huge change that has not been properly consulted upon. Worse, the negotiations about this policy has involved months of secret negotiations between the (mostly Labour) leaders of the ten Greater Manchester councils and the (Conservative) Chancellor. How can this be a proper way to decide the future of a region, policy by secret meetings?

To any Labour politician who is thinking about DevoManc, I suggest you get yourself a barge pole and keep it far away from this policy.

The DevoManc Memorandum of Understanding (pdf) says under the agreement NHS commissioning will be devolved to the Joint Commissioning Board (GM JCB) this will include:
  • Acute care (including specialised services);
  • Primary care (including management of GP contracts);
  • Community services;
  • Mental health services;
These services are either commissioned currently by the twelve Clinical Commissioning Groups, or will be soon, under NHS England's new plans for co-commissioning. (The only exception is "specialised services" which only makes up 10% of the NHS budget.)

The other services that the GM JCB will commission are:
  • Social care;
  • Public Health;
  • Health Education
  • Research and Development
The first two are currently commissioned by the ten local authorities and, along with the commissioning carried out by the NHS CCGs, are overseen by the local authorities' Health and Wellbeing Boards (HWB). (The last two services in the list will involve further consultations because neither CCGs nor Local Authorities are responsible for them, however, taking the responsibility for training and research out of national bodies is very worrying.)

Think about this. This is not devolution this is centralisation! The only part of the NHS budget that is being devolved is the specialised services which is about 10% of all NHS money spent. That means that 90% of NHS money in the twelve CCGs and the ten local authorities that make up the Greater Manchester Combined Authority will be centralised, not localised.

Also, note that CCGs are membership groups. Were the GPs, who are members of the CCGs, consulted about this, and did they approve it? (For the curious, the answer is no, the discussions were secret, remember.) Primary Care Trusts were criticised for being big and remote, the GM JCB will be the granddaddy of big and remote.

Greater Manchester have already created the GM Health and Wellbeing Board. This is "one board to rule them all!" The very existence of this board means that it will override the subservient boards of the ten councils, localism of NHS and social care in the region will undoubtedly be controlled by Manchester City Hall.

This is in no way like the careful plans that Andy Burnham created. Burnham said that under Labour existing NHS structures would be retained (in particular, CCGs and HWBs). He did this specifically because the very last thing the NHS needs right now is yet another re-organisation. Burnham's plans would be for local HWB to have more control over local CCGs, in particular, to ensure that the "NHS Preferred provider" policy is followed. Burnham is not suggesting a radical re-organisation.

DevoManc is a huge, disruptive change and it cannot go ahead without a lot of legislation (not least, changing the behemoth that is the Health and Social Care Act 2012). It cannot be done before the election. Labour's approach should be to calm this down, point out how reckless it is to make policy by secret agreements and promise after the election to have a proper commission on devolution, and before any legislation is changed, have a white paper with proper public consultation.

Monday, 19 January 2015

Fill in the gaps

This is my response to Bill Morgan in a blog on the Spectator. Bear in mind that Morgan was a Special Advisor to Lansley so there is a whiff of the Mandy Rice-Davies about his post.
You rightly start by saying that the 2010 winter was affected by a flu outbreak. However, you then go on to say that 2011, 2012 and 2013 were uneventful. This is not true. There was more flu and norovirus at this point last year compared with now. Last year the NHS could cope (just) with the flu, this year the NHS cannot cope even without flu. It is this problem we have to address. The run up to Xmas was mild - just like it was the year before - so why wasn't 2014 like 2013?
It isn't a small dip in A&E performance. Every winter you will find that *some* trusts will fail to meet targets (the usual suspects), but what is characteristic about this winter is that *every* trust has been effected, even the best performers. Since the dip (you claim "small", well on the front line it isn't seen that way) is universal, so there must be a universal reason for it. You're right to say that Labour have jumped upon the Lansley "reforms" (well, fragmentation of the NHS) without explaining why it has affected A&E performance. The problem is that most trusts will say that they really don't know - the problem started in the summer when we had winter activity all year with no lull. As you rightly say, no trust, nor NHS England can explain why, but the facts are clear - there are large numbers of frail elderly people, who are sick with multiple conditions and these are the reason for the drop in performance. 
People from different parts of the health service and different political persuasions, will have their theories, but it is rather silly to blame it on the GP contract because the performance problems is not due to the people who would have otherwise gone to a GP. You dispute the cuts in social care, which I think is brave since many social services are close to collapse. (My theory, is that it is community health services, that has failed. I think we have got to the limit of treating people "in the community", at home or in nursing homes, certainly at the level of funding there is now. Nursing homes are a particular problem, there isn't enough NHS medical care in those homes (which is their right), so people are deteriorating unseen. You *can* blame GPs for that. Consequently people are being admitted from care homes in a poorly state. But I can be wrong, just like anyone else.)
You say "the reforms – largely focussed on making doctors responsible for long-term NHS planning", which is a statement from a politician, not from someone with any experience in how CCGs run. Most GPs will tell you that they have no more control or say in how local services are planned. GPs are inherently independent and most of them want to remain so. A few GPs have got involved in CCGs, but this happened with PCTs too. GPs joined the PCT and became managers and those few GPs who have joined CCGs have now become managers too. Analysis I have carried out on CCGs show that less than a third of CCG boards have a GP majority (and mostly, that is the limit of GP involvement). Plus ca change, plus c'est la meme chose.
In fact the fragmentation of commissioning has been a disaster, which is why things are changing now and with co-commissioning CCGs are starting to look just like PCTs. For my condition - type 1 diabetes - there was one commissioner of all the NHS services I use in 2010. Now there are three different commissioners, one for the GP services, one for the hospital services and (bizarrely) another one for the monitoring of my diabetic eyes. None of these commissioners talk to each other. Whenever I ask them why such-and-such service is not integrated with the other services (like it was in 2010) I am told "we don't commission that". It's a mess, and the mess was predicted when Lansley came up with his plans in 2010.
You talk of the timing "why would a set of reforms cause short-term problems in our A&Es two-and-a-half years after most of them were in place". This is a valid question (except your calendar is wrong, the reforms came into place in April 2013, 20 months ago, not 30 months ago). However, I think you are saying "look over there". We know that social care has been viciously cut in the last four years (NAO says a 7% cut in spite of a £1bn from the so-called ringfenced NHS budget every year), and four years of cuts are enough to put that service to the edge. Four years of a deteriorating service is more likely to have an effect than a 20 month old policy, however cracked-pot that police was.
Your Wales argument is a red herring. Wales is mostly rural, it has higher levels of deprivation than England and is arguably too small and too dispersed to be an effective health system. The problem in Wales is not Labour, it is Wales, and maybe we should accept that devolution of the NHS to Wales was a mistake.
Bear in mind that Morgan works for a public relations company and its a fair bet that they have a contract with someone or other connected to the Conservative party, so the piece is more PR than anything else. I thought I would fill in the gaps in the PR piece.

Wednesday, 12 November 2014

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.

Sunday, 9 November 2014

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.]

Friday, 17 October 2014

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.

Monday, 15 September 2014

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.

Tuesday, 5 August 2014

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.