Thousands miss out on NHS cash to help them look after sick relatives

Tens of thousands of families are being denied vital NHS funding for the care of relatives with dementia and other debilitating illnesses, according to a damning report.

Many are forced to sell their homes to pay for round-the-clock help – even though the health service should be picking up the bill.

Other patients are dying before receiving any money from the bureaucratic system.

Experts are now demanding an overhaul of the NHS continuing healthcare system.

Some trusts have slashed their budgets to such an extent that funding is now nearly a quarter of what it was two years ago.

A scathing report found the system is ‘not fit for purpose’ and fails ‘vulnerable people and their families at a time when they need the most support’.

It claims few people are aware the funding is available or that they may be entitled to it.

Charities including Parkinson’s UK, the MS Society, and Spinal Injuries Association, along with the Royal College of Nursing have today written to care and support minister Norman Lamb to demand an end to ‘illogical reassessments’ of progressively ill patients.

NHS continuing healthcare is funding for patients who cannot live without medical help, such as those who are paralysed or in the final stages of a degenerative condition such as Alzheimer’s or Parkinson’s.

Alarmingly, the Government has no figures on the numbers eligible for such care, although 59,000 currently receive it.

Charities have previously estimated another 60,000 should get the money but do not.

But even this figure is likely to be an underestimate; there are 800,000 with Alzheimer’s and another 127,000 with Parkinson’s alone in the UK, although not all require 24-hour care. 

An inquiry by the All-Party Parliamentary Group on Parkinson’s along with Parkinson’s UK found patients with long-term illnesses were being unfairly refused funding.

The inquiry’s Failing to Care report found they were subjected to endless  assessments and deferrals, meaning the application process dragged on for months or even years.

Many gave up because the process had gone on for so long or their relative had died.

Patients were assessed by a ‘tick-box’ list, and six in ten decisions were made without consulting a specialist in the patient’s condition.

In one case a patient who had been deemed eligible for funding had it withdrawn after they became bed-bound – as assessors said this meant they were less likely to fall.

In some cases families were quizzed about their finances instead of their relative’s care needs.

Parkinson’s nurse Karen Guy told the inquiry: ‘The process is intimidating, humiliating, unfriendly, exhausting, degrading, aggressive, frustrating and adversarial.’

Steve Ford, of Parkinson’s UK, said: ‘It’s a disgrace that people are dying while waiting for the funding they’re entitled to.’

An NHS spokesman said it tries to ensure those eligible ‘receive appropriate care and support’.