This was published under the 2010 to 2015 Conservative and Liberal Democrat coalition government
Paul Burstow speaks at the National Voices Annual Conference.
I want to begin with a story you could take as one of two things.
You could see it as a typical “day in the life” of a government minister.
Or the example that tells you in a nutshell, why we need change in both the health and care system. How improving the experience of patients not only improves their health, it also saves money.
It starts with the briefing you get about cancer which outlines in no small detail what we’re doing to make sure more cancers are diagnosed earlier, and the lives that can be saved as a result.
This prompts me, the ingenue minister, to ask what I thought was a pretty simple question.
If this is the case for cancer, then what about other conditions like asthma, COPD, arthritis, mental health, for example, where surely, a similar principle applies?
In the case of dementia, it’s a simple equation.
Six out of ten people with dementia going undiagnosed. Waiting for the crisis to happen before they get help.
Six out of ten people whose condition can deteriorate quickly and without warning, and for whom spending the rest of their days in a care home becomes not a possibility but an inevitability.
In this case, the reasons for late diagnosis are two-fold - sometimes it’s a case of GPs and others not recognising the symptoms.
But more often than not, it’s indicative of our attitude to ageing -too quick people are to write off symptoms like memory loss as a “senior moment.”
As if old age inevitably leads to physical and mental decline. Which is why we’ve now rolled out a national campaign on the signs and symptoms of dementia.
Back to that question. What about other health problems? Surely, someone, somewhere, must have looked at this before?
Even the most scant summary of the data we currently have shows that there must be some benefit to looking at early diagnosis in a whole range of other conditions.
Imagine how many fractures - and the disability and dependence they often lead to - could be prevented if we could do more to detect the symptoms of osteoporosis earlier.
Or Chronic Obstructive Pulmonary Disease (COPD). There are around two million people with COPD who go undiagnosed, when earlier diagnosis and treatment will halt or slow down the disease - enabling sufferers to lead active lives for longer and preventing avoidable deaths.
Half of people with COPD will have visited their doctor with symptoms in the two years before they are diagnosed - some are only diagnosed when their condition gets so bad that they have to go to hospital.
It turns out we’re not the only country where this question isn’t being asked - it doesn’t seem that any other government has yet asked it either.
This is why I’ve commissioning a study to see what evidence there is that late diagnosis is an issue in this country and, most importantly, what can be done about it.
The study will examine 20 years’ worth of evidence to look at why it is that some conditions are diagnosed late, where the delay happens, what its impact is and what interventions we need to pursue.
I can’t anticipate its findings, or tell you how many lives we might save in the future, or what kind of novel interventions it will lead to.
But I have no doubt it will underline again a fundamental point about healthcare reform.
If we want people to have a better experience in health and social care, we need to do things differently.
We now have 15.4 million people with long term conditions, on which 70p in every £1 of the NHS’s budget is spent.
The question that the Nicholson challenge asks is if we can really say that money is well-spent, particularly when one in three people with a long term condition don’t have a care plan.
If we see every trip to A&E as a failure of the health and care system rather than its defining purpose, then the answer must be a resounding no.
We know that sometimes, there aren’t always the right incentives in the current system to encourage proper management of long term conditions.
When every admission to A&E or acute care episode in hospital results in a payment, where’s the encouragement for secondary care health professionals to work with their colleagues who deliver community and primary care services to prevent such admissions?
That’s why we want to develop a “year of care” funding model for people with long term conditions that will actively encourage integration of health and care services - because it will help us deliver better outcomes for people.
So instead of simply passing costs and responsibility for people with complex health problems around the system, we can look at how we can create incentives for organisations to manage people’s care jointly - to invest in services that will keep them out of A&E and in better health.
We believe that this will help us dramatically improve the quality of care for people with long term conditions.
But it will be challenging work. It demands a different mindset among professionals and sometimes among people with long term conditions themselves.
A much greater focus on the three Rs of healthcare- recovery; rehabilitation and reablement.
Yes, some of this is about funding and structures.
But a big part is also about attitudes and behaviours.
An emphasis on what people can do, not on what they can’t. And what those around them - in their communities, in their families can do for them as well.
The costs to the NHS of not getting this right are big,
But the social and economic costs go wider still.
It’s obvious, but it isn’t said often enough. People with long term conditions die earlier. They have a poorer quality of life.
They are more likely to be out of work for long periods of time and more likely to claim benefits.
This isn’t just a health issue - it goes way beyond that. We need to look at this issue in a much wider context.
Which is why I have commissioned work to develop a Long Term Conditions outcomes strategy that will go far wider than health - it will be a cross government strategy.
One that will help us identify the key points in people’s lives where interventions to change people’s behaviour are most likely to be successful, and the areas in the country where there’s the biggest need for them to be deployed.
Deprivation is a major determinant - the correlation that successive governments have failed to scrub out between poverty and poor health.
Poverty of aspiration and education, exacerbated by living in the most run-down areas, served by the worst schools and often the most overstretched health and social care services too.
And as National Voices has pointed out for many years, their voices are rarely heard by the system.
Those who are most reliant on health and care services, and on whom most of our resources are spent, aren’t necessarily getting the best care.
By definition, you could argue that they are often getting the worst - because long term conditions that are poorly managed mean greater expense for the NHS and worse outcomes for patients.
Reform of the NHS has to deliver not only more choice, but more meaningful and positive patient involvement - both in the design of local health and care services, but also in decisions about their care.
I know there are some concerns about our commitment to greater patient and public involvement, and whether HealthWatch will have the clout and the independence it needs to do its job.
I’d like to respond to some of these concerns today.
First, the NHS Commissioning Board will be seriously committed to engaging the public and to promoting choice. The amended Bill puts both the NHS Commissioning Board and clinical commissioning groups under much stronger and more distinct duties -in relation to patient choice, promoting patient involvement.
While HealthWatch England will be part of the Care Quality Commission, it won’t be at their beck and call or anyone else’s.
It will set its own agenda, listening to the advice of local healthwatch groups. And when it raises issues with the CQC, the CQC will have to listen and respond.
And while we won’t ring-fence local authority funding for local healthwatch groups, we are making it clear that local authorities must provide adequate support for local healthwatch groups to be able to do their job - if they don’t, they will be breaking the law.
The new system will champion integration - it’s explicit in the duties of the regulators, NICE and the responsibilities of the NHS Commissioning Board, health and wellbeing boards and clinical commissioning groups.
I am confident that the creation of Health and Wellbeing Boards will be able to fulfil their role as the local system leader: bringing together councillors, their senior advisors across social care, children’s services, and public health with the leaders of the clinical commissioning groups and healthwatch.
Going well beyond the integration of health and social care. Bringing together all of the council’s services into one place - housing, police, schools and others.
For the first time ever, local government and NHS are bound together in one common commissioning cycle.
It may not happen today, or even tomorrow, but as health and care reforms get more leverage, it will be more difficult not to integrate services.
Smarter ways of working, doing things differently, determining how we deliver by what people need, not the institutional barriers we’ve learned to live with - common threads in NHS reform.
And common threads in social care reform - just as critical as health reform, and very much interlinked.
The case for funding reform, for law reform, for better services is clear.
But there’s something more fundamental we need too. And that’s understanding.
The case for funding reform will fail to reach first base if we don’t wake people up to social care’s nasty little secret: it isn’t free, and never has been.
Today, families face potentially catastrophic costs.
But most people think that social care is free just like the NHS.
If funding reform is to make progress, it must be measured against reality not fantasy.
When the Dilnot Commission reported in July, you could have been forgiven for thinking that Andrew was proposing introducing charges for care for the first time, not that his plans were going to cut the cost of care for most families and offer peace of mind to all.
Together, we must shake people out of this cozy dream and awaken them to the reality of our unfair system.
Otherwise, we’ll never get anywhere at all.
Our working assumption can no longer be “old age equals infirmity and mental decline.”
Good health and long-lived independence need to be the default, not the exception.
Our focus has to be on what people can do.
The driving force of our reforms needs to be developing a health and care system that’s more humane, and more relationship centred - call it putting the social back into social care if you like.
Because this is the only way that we’ll meet the austerity challenge. And it’s the only way we can deliver radical improvements in both health and social care.