Charity’s fears over cuts applied to patient’s healthcare budget

East of England businesses have millions of pounds tied up in working capital. Picture: James Bass

East of England businesses have millions of pounds tied up in working capital. Picture: James Bass - Credit: Eastern Daily Press � 2008

A national charity has called for action amid fears money is being skimmed off budgets for people with long-term health conditions in Norwich.

Muscular Dystrophy UK has told Norwich Clinical Commissioning Group (CCG) its patients deserve clarity after 39-year-old Kirsty Read looked into the money she receives for care for spinal muscular atrophy.

She uncovered an automatic percentage deduction that is imposed after the calculation of how much money she should receive. The cut applied increased as the value of a care packaged increased.

It is a step which Muscular Dystrophy UK said experts they consulted had not seen this anywhere else in the country - and a situation Miss Read branded as 'terrifying'.

However, a CCG spokesman said all CCGs in Norfolk and Waveney followed principles set out nationally.


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The cut appears to occur when working out a personal health budget (PHB) under NHS continuing healthcare.

Under the scheme, patients with complex health needs or long-term conditions are given a budget – usually directly paid to them – which they can then use to buy health services of their own choosing.

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For Miss Read, whose budget was cut by 13pc (£7,300), she said this meant topping up her budget with money given to her by Norwich CCG for a new wheelchair, as otherwise she could not pay her personal assistant.

Miss Read said: 'It's terrifying. The PHB scheme is supposed to be helping people live their own life the way they have to. I want to see equality in budget calculation. It's making it impossible for people to have a PHB.'

But the CCG said 'the full cost of the care required by any patient on a PHB is funded, as per the NHS direct payment legislation'.

Robert Meadowcroft, chief executive of Muscular Dystrophy UK, said: 'Norwich CCG's policy appears to establish a person's level of clinical need, only to then completely disregard it in favour of reducing costs. As a result, people with muscle-wasting conditions are struggling to make up the shortfall in their care.

'The CCG owes its patients transparency, and must urgently review the impact of its policies, ensuring that local disabled people get support they desperately need.'

Mr Meadowcroft added: 'Frustratingly, the CCG has blocked every effort to clarify details of their rules and why they are being implemented in the way they are. They are a public body and therefore should be accountable, yet it is only thanks to Kirsty's tenacity that we know as much as we do.

But a spokesman from Norwich CCG said: 'As a general principle, the NHS has a duty to ensure that services purchased by a patient using a Personal Health Budget are appropriate and that the staff they employ are properly trained, and paid the market rate. Personal Health Budgets are designed to provide sufficient funding for the level of care needed - as such we ensure that the full cost of the care required by any patient on a Personal Health Budget is funded, as per the NHS Direct Payment Legislation. The CCGs in Norfolk and Waveney apply consistent principles that are set out nationally, and which ensure everyone is treated fairly.'

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