Jeremy Hughes

Jeremy joined Alzheimer’s Society in November 2010. He is leading the charity in its five-year strategy, ‘Delivering on Dementia 2012-17’, managing an annual budget in excess of £90m. Jeremy co-chairs the Dementia Friendly Communities Champions Group with top broadcaster Angela Rippon for prime minister Theresa May. Jeremy was previously chief executive of Breakthrough Breast Cancer. Before that he was head of external affairs at the International Federation of Red Cross and Red Crescent Societies. His career in health and social care charities includes leadership posts at the British Red Cross, Leonard Cheshire, Muscular Dystrophy and NCH Action for Children.

 

Among the biggest opportunities facing the NHS is the opportunity to make the connection between providers and patients stronger. With the NHS under financial strain, providers are forced to chase incentives to balance budgets rather than enhance care for patients. To me, and to patient organisations, it is evident that commissioners need to address this imbalance.

Sustainability and transformation partnerships

The sustainability and transformation partnership (STP) process aims to help align commissioner and provider plans across a larger footprint. That begs two thoughts on STPs.

Firstly, we seem to invent new approaches to commissioner reform – we’ve gone from the Better Care Fund to vanguards to STPs in a couple of years. The system seems to jettison the last project and replace it with a shiny new one, making it hard to keep up from outside the NHS and to see the opportunities.

We seem to invent new approaches to commissioner reform – we’ve gone from the Better Care Fund to vanguards to STPs in a couple of years. The system seems to jettison the last project and replace it with a shiny new one, making it hard to keep up from outside the NHS and to see the opportunities.

   

The second is whether STPs can deal with the regional and local variation across the health system. Do markedly different plans need to be drawn up independently across different landscapes? The need for good Alzheimer’s services is pretty similar in Bangor in Northern Ireland, in Bangor in Wales and in Bognor Regis in England.

Within the English NHS, are the differences in care provision so great as to need us to draw up different STPs for every footprint? And what happens if you live on a boundary between STP footprints: a real challenge.

I live in north Dorset, and many of our local health services are provided from south Somerset. But these are two distinct STP footprints. Local commissioning should be about empowerment and planning: clearly that is great, but we must always remember the N in NHS. This is about a national service and support. Our dementia helpline often gets calls from people who say ‘my parent has dementia in another part of the country, and I have been told they should have this and that service, but where they live they can’t get them’.

Clearly, the NHS faces difficult decisions but uneven access to dementia care is unhelpful because it leads to higher and more costly health needs. It is particularly unhelpful to have a postcode lottery in this.

   

Clearly, the NHS faces difficult decisions but uneven access to dementia care is unhelpful because it leads to higher and more costly health needs. It is particularly unhelpful to have a postcode lottery in this.

Another possibility is that STP plans represent an attempt to drive joint commissioning at a rational scale. Money talks: if STPs pool budgets and re-address where money is spent across a health economy, then we could be onto a winner and see better allocation across the sectors within health and care. Without that real influence over budget, and particularly without full participation of local government, the risk is that STPs become like health and wellbeing boards – all too often talking shops, without much result or impact.

However, it is also important to remember that in social care, most people get no state funding at all. Integrated budgets are potentially better used for state-funded services, but we should be concerned about tens of thousands of people paying £1,000 a week on their own care provision. The people facing crippling care costs should not remain outside of the STP programmes’ thoughts, but this may well be the reality.

Engaging patients and the public

Another very significant element – engagement of patients and the public – is still often pretty rudimentary. Understanding of what we are trying to change in devo deals, and health and care reform overall, by the public and patients is still often very poor.

Most people don’t understand that the NHS doesn't fund social care until they know someone hit by a crisis of need. Unless we involve public opinion and understand more fully, we’ll come to the crunch of closing or downsizing the beloved local hospital to meet a public and local MP outcry as the changes have not been explained properly.

   

Most people don’t understand that the NHS doesn't fund social care until they know someone hit by a crisis of need. Unless we involve public opinion and understand more fully, we’ll come to the crunch of closing or downsizing the beloved local hospital to meet a public and local MP outcry as the changes have not been explained properly. And so we go back to square one.

Clinical commissioning groups (CCGs) face two very significant challenges: one is their ability to be informed by consumers. Patients matter. I chair a CCG improvement/assessment group on dementia, and it is very clear we don’t collect data well enough to inform CCGs on patient experience. The friends and family test is lightweight and not useful for dementia.

This can be much better: we know the biggest demand comes from patients with long-term conditions. Most CCGs spend on dementia was over £260m in the last year, but our information on falls, time spent in acute settings and emergency readmissions for dementia shows that evidence-based commissioning is not supported well. It is also of concern that information about patient experience doesn't seem to be built in to support provider behaviour change by CCGs.

The second major issue is about being able to share experiences across and between CCGs. Within CCGs we see some great examples of very good practice, but it is not consistent. What is each CCG doing to spread their good practice across the whole of their patch? Most have a dementia lead, but how well supported and resourced are these people to share learning and best practice across their area? Equally, we need inter-learning between CCGs to avoid silos of bad or outdated practice.

Co-commissioning for primary and specialised care

In terms of co-commissioning both for primary and specialised care, personal health budgets and integrated personal commissioning give us an opportunity to do bottom-up working with patients and their advocates to use resources better. The All-Party Parliamentary Group on dementia found people attending 20 different agencies to get the support they need, especially patients with other co-morbidities.

In terms of co-commissioning both for primary and specialised care, personal health budgets and integrated personal commissioning give us an opportunity to do bottom-up working with patients and their advocates to use resources better.

   

We are not getting integrated care in a system driven by top-down specialism. Pilots we have done in Nottinghamshire on personal health budgets and personal commissioning to put choice in the hands of patients, with support from organisations like ours, can provide much more joined-up and helpful ways of using resources.

The move towards outcomes-based commissioning is likely to be difficult for many, but must be the way forward. It is about better data on patient experience and satisfaction: because we don’t know what they expect, it is hard to define outcomes and quality for them. We know about single interventions but people with multiple, long-term conditions are the biggest NHS care consumers. So why do we seldom look at the whole person and family and carers? Still we focus too much on the individual disease or condition.

A real outcomes-based approach would look at the whole person and support for their whole life within an annual budget. I think we will move increasingly away from GPs doing 10-minute consultations on an individual disease, to primary care professionals delivering 1-hour sessions on in-depth working with patients’ multiple diseases. South Somerset’s Symphony programme proves that care can be much more joined up: more effective, cost-effective and improving patient benefits.

The future of the purchaser-provider split

As for the purchaser-provider split, I think we need payers and providers to get better at talking together and we need metrics to inform what makes the most difference. But we still need both roles to be pursued: commissioners on making best use of resources and providers on how best to use the available funding. We need consistent communication, including a louder patient consumer voice in the whole healthcare decision-making process, and to look at changing care across the whole of England rather than in individual, institutional silos.