Who counts the cost of patients spending their own care budget?

Giving patients a greater say in decisions about their care has been a goal in the NHS for some time. The personal health budget is one of the most significant elements of that objective.

The basic principle of personal health budgets (PHBs) is that a patient is allocated an amount of money that they can spend on items or services they believe will enhance their health and wellbeing.

Typically, they may request regular visits by a nurse, physiotherapist or carer – but what if they want something less conventional? Could a mental health patient argue successfully that a visit to the Blackpool Illuminations would lift their spirits and therefore enhance their wellbeing? Should the NHS use taxpayers’ money for these purposes?

National media coverage of PHBs, which focused on people spending their allocated money on ‘treats’ such as horse riding and holidays, has sparked a debate about whether NHS money is being used appropriately.

The pilot project

Personal health budgets (PHBs) were piloted at 70 sites in England from 2009-2012 as part of a Department of Health drive to promote patient-centred care.

An evaluation of the pilots, commissioned by the department and published in November 2012, recommended that PHBs be introduced across the country.

PHBs take different forms. There are ‘notional’ budgets where an assessor – often a nurse – buys services directly from a provider such as a care agency. Money can also be given to a carer or someone the patient knows, or a payment can be made direct to the patient, who then takes responsibility for organising their care. Alternatively, patients can choose a mix of the three options if they wish.

To be eligible for a PHB, patients must be in need of ‘continuing NHS health care’ that involves ‘substantial and ongoing care needs’ relating to a specific health condition or diagnosis. For example, those with chronic obstructive pulmonary disease or serious mental health problems such as bipolar disorder may qualify.

Organising services

Nurses are often involved in the process. Since the national roll-out of PHBs in England last October, nurses have been assessing patients’ needs, helping to decide how much money they should be given and offering advice on where they might best be able to spend their allocation.

Joanna Grant is a nurse assessor for PHBs for children with complex needs in Croydon, south London. She manages one family, but three more are in the pipeline. She says: ‘We ask questions using a standard form and toolkit to establish the needs and goals of the child and the family, and to calculate the number of hours they need. This is a different process to conventional nursing because it feels like organising services with a social element to improve someone’s health – it’s more like case management.

‘It’s focused on the outcomes the families want, such as for their son to be able to go to school each day. We make suggestions based on what is available but they ask us for things as well. If their goal is to have a holiday we may suggest the budget could be used for a nurse or some support while they are there. But it can be difficult to find nurses for this. After I set a PHB and a care plan it has to be approved by a panel of CCG professionals and managers.’

The RCN is supportive of these budgets in principle, although head of policy Howard Catton argues that guidance is needed for staff deciding how budgets are spent.

Picture credit: Alamy

‘The money should be spent on things that bring health and wellbeing benefit, so there does need to be guidance on this,’ he says. ‘We don’t want the guidance to be extensively prescriptive though, because this would detract from the original idea of involving patients in decisions about their care.

‘But the health service is under increased financial pressure and so there is going to be more scrutiny from taxpayers about how their money is spent. It’s not surprising that society may take a less than compassionate view if a patient uses the money to buy a season ticket for a football team.’

NHS England is running five-day courses to train nurses in assessing patients for PHBs. They cover budget setting, care planning, safeguarding and monitoring how well PHBs are working, but a spokesperson told Nursing Standard there are no plans to publish guidance on what would constitute acceptable spending.

There needs to be guidance on how the money is spent

– Howard Catton

Mr Catton adds: ‘PHBs give people the chance to develop more tailored packages. They allow them to choose who provides the care they receive in their own home and meet their needs in ways that work for them. This includes buying things that are not traditionally commissioned by the NHS.’

Analysts from the University of York, University of Kent and Imperial College London, who evaluated 20 of the 70 PHB pilot sites for the Department of Health, concluded that they benefited patients (see box).

The evaluation looked at people with six conditions including mental health problems, chronic obstructive pulmonary disease, stroke and diabetes. Typically, patients were using their budgets for visits by nurses or physiotherapists, meals services or leisure activities.

Reported benefits

Their experiences were compared with those of patients receiving conventional care. The review found that those with PHBs displayed a ‘significant improvement in the care-related quality of life’ when measured using the Adult Social Care Outcomes Toolkit alongside improved psychological wellbeing.

Think Local Act Personal, a partnership of more than 50 organisations committed to transforming health and care through personalisation and community support, says many patients report benefits from having access to PHBs.

Ricky, who did not wish to give his full name, has bipolar disorder and used his budget to buy a computer and research his condition. He also bought cinema vouchers and pays for a carer to visit him.

He says: ‘Going on the bipolar website has helped me understand my illness, and now I can manage it better. I have this little card and I can go to the cinema any time.

‘With my illness I sometimes need to escape from what I am thinking, take myself away, and the cinema does that. Having a carer two and a half hours a week helps.

‘Sometimes when I’m low,’ I don’t eat and drink,’ says Ricky. ‘But having my carer Denise come in means she prepares my meals and then I freeze some so that I can just put them in the microwave later’.

See reflections page 26

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