NHS Chaos theory


What’s going to happen to our NHS?

I’m going to try to pull together, from a patient’s point of view, the issues facing the health service at the moment and in coming years.

There’s a lot being said…but here’s my take. I’ve been reading loads of things, from board papers to HSJ to the Guardian, to Twitter, to the Kings Fund and the Health Foundation, and NHS Gooroo. Even Roy Lilley’s great newsletters, which are a source of information and “excellent stuff”.


There’s not enough money in the system. Many trusts are now in deficit. It’ll get worse next year.

NHSE bungs funds around struggling trusts to get them through, but it seems that these will become repayable loans.

Hospitals were built for a smaller population, so they can’t manage current demand. It’ll get worse.

Cost improvement plans (CIPs) have not been realistic and have not been achieved. It’ll get worse.

The future funding model requires CIPs of 3% pa. This has not and will not be achieved

The current models of care (including social) are unsustainable and in any case do not provide person centred support for people to live well with their conditions, or indeed to remain healthy for longer.

There is a proposal to increase the Better Care Fund (BCF), using existing NHS funding, in order to further integrate health and social care.

Mr Hunt also says this will help prop up social care budgets. So funding within the NHS will reduce as health budgets cover cuts in social care budgets, made for reasons of balancing the nation’s books.

What’s wrong with a deficit, or debt? We’ve always had them. It’s how countries ( and many of us people) work. (Will Hutton)

CCGs are struggling with their own shrinking budgets, and some are trying to claw back money from provider trusts, through fines and unachieved QUIPP targets. Trusts are resisting.

CCGs are now taking on primary care commissioning. At a time when they are still developing capacity and expertise after the reorganisation two years ago. With shrinking budgets.

CCGs are run predominantly by GPs. They are taking on responsibility for designing and buying services from their own GPs. CCGs are “membership organisations”, meaning they ARE their GPs.

Decisions about all matters primary and GP will have to be made by a few non-exec directors. Lay members. People who who are untrained in health matters and often do not understand NHS complexities. They will act on recommendations from…guess who?

Provider trusts are set up as independent organisations that have to break even, or turn a surplus for investment. They have not evolved from small businesses, and they are not run by businessmen. Indeed, they are not businesses. They cannot significantly alter their income or their expenditure. They are by and large stuck with what they have been gifted.

Provider trusts have little intrinsic reason to cooperate with other trusts if in doing so they will lose income or increase costs. They are bound by rules that require them to break even.

NHSEngland (NHSE) is reducing its workforce in order to save money. As a result it is also withdrawing from hands-on work to lead innovation and remodelling of health care. NHSE is becoming a distant group of watchers and commentators.
There are Vanguard sites for innovation, following models proposed in the Five Year Forward View. These could prove that new models will work better for patients but I t will take at least five years to see results and evidence.

Local health economies that know they need to change have not got the capacity, funds or headroom, or (probably) the willingness to take risks, to make change happen. They are fighting daily fires.

Providers trusts and commissioners and local government blame each other for not doing enough to solve their crises. Few look at their own systems critically and with solutions in mind.

Health and Wellbeing Boards are intended to bring together all commissioners and providers of health and social care, so that they work in partnership to co-produce solutions and better ways of working…for the benefit of people in their purview. You and me.

There is little evidence of this happening. But politicians seem to want to hand health and social care budgets to locally elected councillors, in order to integrate budgets and care.

Who are these councillors? What track record do they have in managing billions of pounds of spending?





You really couldn’t create a better picture of chaos if you tried.

What will happen?

I believe that humankind only takes real action when faced with extinction. Until then we try to deny what is staring us in the face.

So I believe the NHS will be saved, but not until it pretty much collapses.

Our politicians are no different from us. They want to hang on to their jobs as long as possible, and they don’t know how to fix the NHS.

Now and then one thinks he does (aka Lansley) but just gives another iteration of a doomed, unworkable system.

Breakdown then rebirth.

I just hope I’m not waiting at A&E when it happens.





Diagnosed with dementia… Oh, and still a human being

imagesThere are many surprises after a diagnosis of dementia, and I was chatting about some of them Monday night with friends from the UK. One of the most common is the ‘friends’ who disappear after they find our we have dementia.
A few weeks ago I was interviewed on the telephone by one of the producers of the SBS television program Insight in preparation for the filming of it last week, and the final question I was asked is this: What has surprised me the most since being diagnosed with dementia?
Sadly, it did not take me long to answer this question, and I answered saying:

The one thing that has surprised me the most is man’s inhumanity to man …

Why have we been systematically locked away and/or ignored as if we are not human beings once we are diagnosed with dementia?
I have often said I have often felt like I am…

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Let us live better with dementia

Two good topics here: those of us living with dementia get little support to live well; carers get more, it seems, and are listened to more. Remember the lepers in Ben Hur. Listen to us.

mortality 2The last few days have been racked with a sadness after the loss of a friend with younger onset dementia; for many of us there has been a revisiting of our own mortality, and the issues many people with dementia and our loved ones discuss, especially in the early days following a diagnosis. The fear engendered by the hideous and negative media campaigns, the language of war being used to describe dementia, and the negative dehumanising and demeaning language to describe our experience… no wonder many think it is preferable to commit suicide. ‘Society’ is still determining it is not possible to live well with dementia.

The question so many of us have asked is this: should we take our own lives, to stop the ‘suffering’ that society tells us (repeatedly, and oh so very repetitively) we will experience?

As well, we have Alzheimer’s Associations and Societies who fundraise primarily to support the operation of…

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NHSEngland Chefs wash their hands a lot


So, I’m in Leeds on Thursday. Sunny morning. Bad chest and nose cold. Feel fairly bad. Wish I was at home.

I’m there to co-present what we did in the (excellent) Patient in Control project handled by South East CSU.

I walk into a large, angular room tightly filled with big round tables and chairs. In one corner a huge screen presenting the brand image. It’s hot.

An hour later we start. I count 70 people. Half the chairs face the wrong way. There’s little space to turn round. Can’t chat across the huge tables. Projection of presentations not allowed, so little groups of people gather nervously in front of the towering screen for their (timed) 3 minutes to tell their stories.

It’s all good fun. The timer klaxon goes off regularly. Each person dashes through their speech. It’s a rush. We laugh a little nervously as these people are stopped from explaining what they have spent 18 months doing.

It’s hard to hear these stories. The PA system hardly amplifies, and most of us don’t hold the microphone close enough.

There’s no highlighting of the speakers. No stage. No celebration, other than the clapping after each, in recognition of their brave timekeeping.

Near me, an NHSE person spends the whole morning on his laptop, doing email, writing reports, whatever…He’s not present. Another has the highly responsible work of timekeeping on their phone.

I cannot get a fix on what is being said.

Before these report-backs started we had two rushed, though not short, talks about the lead up to our projects, and then about the NHS Citizen project.

NHS Citizen. What a great label. We’re all citizens, so it’s for everyone. We all use the NHS so it’s for everyone. Citizens behave respectably, within the laws and traditions of the country. We all want to be good citizens. Citizens support their country, and of course the NHS.

What does this all mean? Well it looked to me like a Spanish omelette. Get a few eggs, find whatever is in the fridge, chop it all up, mix it, cook it…wow! That looks good.

Or is that a frittata? That sounds more citizen like. NHS Frittata.

And what is this frittata going to deliver? It reminds me of that dear old project “Patient Leaders”. Great sounding lightbulb idea from NHSE people who needed something for unspent year end money. What are leaders leading? The NHS? No. Their own needs? Perhaps.

Are they leaders? A few.

But the work has contributed to awareness raising of the need to get patients involved and engaged and round the tables when services are designed, commissioned and evaluated…

And if we end up with a frittata-patient-expert-activist bank it’ll be at least one good outcome, assuming anyone has the money to run any projects and use us activists. We of course are free, but those who organise us have to be paid.

NHSE is not paying for any more of these projects, so CSUs now have to sell their products to CCGs.

Another NHS example of a short burst of activity for a good idea which is withdrawn before it gets traction. If social movement is supposed to take this forward let’s make it a real social movement! Rather than a pseudo commercial hand-off.

So I have had two hours of rushed, disjointed talking, in an uncomfortable hot room, facing the wrong way, hardly able to hear…and I think…

I have got to get out.

I am totally discombobulated. Can’t put my finger on any one cause, but I just cannot take all of this in, process it, understand it, store it…and feeling ill hasn’t helped.

It strikes me that there are people whose working lives revolve around thinking up ideas, meeting people and persuading them to do things on their behalf.

There are people who know that their salaries depend on doing what their masters ask of them, so they go out and do those things. They have to listen to these ideas makers and be polite and a little subservient. These people (some at least) are caught between their own passion, and others’ needs, to see something happen.

And there are people who want to see change happen, but who aren’t subservient (tied) and do not want to spend their time listening to chopped up, whisked bits and pieces fed by people who are eager to wash their hands.

When you are not paid for your time you learn to quickly diagnose that feeling of slight nausea rising as you see the frittata ingredients being prepared. And you know it’s time to get out.

Yesterday it took longer than usual. I left at lunchtime and got home in daylight. To peace and quiet and fresh air.

Patients in Control of their lives and health…this is just the start


Yesterday NHSE held a wrap up meeting in Leeds to share the work and learning from two years of projects carried out by CSUs. (Commissioning support units)

This was my contribution on behalf of the excellent work done by South East CSU…

I am a patient activist, otherwise known as a patient leader. I responded to an invitation last summer to become involved in this project about putting patients in control of their Health care.

I have subsequently co-designed and facilitated the seminars we have delivered to some 14 CCGs, with several more planned.

It has been a real pleasure to work with these guys from South East CSU. It’s also been an inspiration and education.

I have found out huge amounts about person centred care, providing the right information at the right time, shared decision making and planning, social prescribing, care navigation and coordination, shared electronic records, patient activation…

And I have used my slightly obsessional interest in all things medical and patient related to mine Twitter and the Internet for research, evidence, reports…anything that is out there that we can use to support our case

… that enabling people to take control of their lives in health care is good for them, good for the NHS, and good for the economy.

I have told my story as a patient with several LTCs. I have spoken about what great care for people with dementia might look like.

I have challenged clinicians who say they treat conditions not people.

And GP commissioners who say they have no time to change they way they do things.

That their patients don’t want to take control or responsibility for their health.

And I have been supremely heartened by CCG board members who really get it. Who are already making changes to support and empower patients to be in control.

And who are working with voluntary and social care provider organisations provide holistic support wrapped around patients’ needs.

The paradigm is changing. Patients will become equal partners in their care. But we need to keep this movement going.

Martin McShane told us recently that change in the NHS takes 5 to 7 years. So 20 half day seminars are not going to achieve much lasting change. It’s just the start.

I urge NHSE to continue to support this work.

If you want change to happen. If Simon Stephens wants the five year forward view to happen.

We have a proven model for working with commissioners and organisational knowledge that will be lost if it is not used.

There is nothing more important to us patients. And you exist to provide us with the healthcare that enables us to live well.

We must make this happen.