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Innovation through personalisation

On the announcement of the 2018-19 figures for personal health budgets, the Director of Personalised Care at NHS England and Improvement sets out the case for their valued innovation and how they can transform people’s lives:

The NHS is a cherished institution that people, quite rightly, want to see protected so it can continue to deliver the high quality, free at the point of need service we have come to rely on.

Protecting the NHS doesn’t mean however that we should not look for ways to improve the service currently delivered or continue to innovate in patient care.  This can sometimes be met with suspicion and opposition – especially within an institution close to everyone’s heart.

Take personal health budgets (PHBs) for example. The concept of providing people with choice and control over their own lives comes from a long history of independent living and disability rights campaigning. In the 1970s disabled people quite rightly called for there to be ‘nothing about us without us’.

People experiencing home-based care were often subject to impersonal care through private agencies, without any choice on the basics of life – such as what time to go to bed or get up in the morning.

Care planning was limited to a medical model assessment with questions such as how often and at what time they needed the toilet. I don’t know about you, but I usually go to the toilet at different times and when I need to – it tends to depend on how much liquid I have consumed.

Whilst there are still too many examples of a lack of personalised care being provided, the position is thankfully greatly improved from those early days of the movement.

The solution was the introduction of more personalised care and support planning, focussing on a social model of disability and asking people what mattered to them. The concept of personal budgets – where people could employ their own Personal Assistants (carers) to determine how and when they were supported was first pioneered in 1988 by the Independent Living Fund (ILF).

These exceeded initial expectations, and in 1993 a more formal ILF/Local Authorities relationship was introduced to extend support for people with the most complex needs. The Direct Payments Act in 1997 allowed councils to make cash payments to individuals for the first time, rather than simply delivering services.

Following its successful implementation in adult social care, the NHS responded by piloting PHBs in 2009.

PHBs were initially slow to develop but have considerably accelerated in popularity over the past few years, with increasing numbers benefiting from the programme.  They are also successful, with 86% of people saying their PHB has delivered the outcomes that they were seeking and are cost effective, with an average cost 17% lower than more conventional service packages.

PHBs are not about backdoor privatisation or creating insurance-based models of care. They are about dignity, choice, control and giving people the basic level of personal and domestic care that any civilised society should provide.  No-one is charged for a PHB – they are grounded in the NHS Constitution. The level of the PHB is set at the right level for the agreed ongoing care needs for an individual and it does not exclude them from accessing other NHS services like anyone else.

PHBs are not intended for all groups or in all services. They are focussed on people with specific and sometimes high level and complex needs that require ongoing support to achieve greater levels of health equality. It therefore saddens me that some people attack the concept based on preconceptions, rather than seeing the people and circumstances behind the programme.

Some of the more innovative approaches taken in the use of PHBs to support people’s health and wellbeing have been described as ‘Feel good treats and pets on the NHS’. This might make for a good headline, but it does not remotely capture the reality; ‘NHS spends money on supporting people to eat, go to the toilet, be able to work, dress, get into bed’ is much more accurate, although I feel probably not as exciting.  100% of spend on PHBs is clinically signed off. 94% of spend isn’t remotely luxurious – maintaining a clear ventilator tube to enable you to breathe, having a PEG regularly cleaned so you can eat or giving respite to a family member providing care is hardly a treat.

So, what about the small amount spent on dogs and iPads on the NHS? Assistant dogs that are highly trained to support disabled people, including being able to detect an infection or the onset of a seizure for example, and iPads that enable someone with MND to communicate and to control the heating, lighting and door entry to their home. Both build independence and reduce demand on the health and care system. They can be life changing for individuals and also highly cost effective for the system. Even the vehicle hired for siblings in the Midlands gave them priceless freedom whilst saving the NHS money.

PHBs are also scalable to individual need with regard to the amount of responsibility individuals need to take to manage the money.  Around 50% of people opt to manage the package themselves with the remainder choosing to have their services provided in a more traditional way by the health system, but still with greater choice in the way that care is provided.

I can understand why the new and innovative can cause controversy. But PHBs are not new, and simply help to create an NHS that is fit for future generations, one that can efficiently deliver on its commitments to the public and continue to meet its founding principles.

Let’s continue to improve health and wellbeing outcomes and ensure we always look at the needs before the headlines.

James Sanderson

James Sanderson is the Director of Personalised Care at NHS England and Improvement, working within the Strategy and Innovation Directorate to oversee the strategy and delivery for a range of programmes that are helping to empower people to have greater choice and control over their care through the delivery of Universal Personalised Care. This includes the Personal Health Budgets programme, Social Prescribing, Shared Decision Making, Personalised Care and Support Planning, Maternity Pioneers and developing and implementing new models of delivering patient choice.

James joined NHS England in November 2015, and was formerly Chief Executive and Accounting Officer for the Independent Living Fund (ILF). The ILF used to support disabled people across the whole of the UK to live independent lives through the provision of direct payments enabling the purchase of personal assistance support.

After graduating, James embarked on a career in the private sector before joining the ILF in 2002 to undertake a number of senior roles including Operations Director with responsibility for front line service delivery, and Business Development Director with responsibility for performance development, change management and information governance.

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3 comments

  1. Paul Watson says:

    Where can you find advice about how Personal Health Budgets are supposed to work? You cite various examples of how varied use can produce better outcomes for less cost, but my local area point blank refuses to do this limiting use to PA hours only. This is particularly and issue when for whatever reason a PA is not available and so instead of being able to access alternative methods of support the parson is left without any support at all for that period….. Are there any guidelines as to what should happen in those circumstances?

  2. Hilary Price says:

    If you are serious about person-centred care, and about parity of esteem between physical and mental health, will you make Personal Health Budgets available to people who could benefit from accessing psychological therapies in the private and voluntary sectors because of the long wait and limited availability of NHS services?

  3. Martyn Philbrick says:

    This is a great article James and your commitment to PHBs shines through. Having followed personalisation for many years, since setting up a DP Project Team back in the early 2000s, I can honestly say your article presents an honest, common sense approach.
    I believe PHBs have the potential to create life changing improvements to the lives of the 1.3 million people in the ESA Support Group, and particularly the 50% of that group who have a mental health condition. New ways must be found to help people who have an aspiration to return to work to find the right personalised support that helps them to do that. I believe PHBs are the flexible innovation that can make that happen for large numbers of people.