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From an elderly man in constant pain with bone cancer to a bed-bound stroke victim unable to speak: The harrowing stories that shame health chiefs denying vulnerable patients vital care which the NHS should fund

  • Campaigners are calling for a crackdown on the rogue NHS officials wrongly refusing financial aid to sick and elderly people
  • Thousands are entitled to help from Continuing Healthcare fund, which covers costs of long-term social care
  • But campaigners warned that the vulnerable are being turned down by Clinical Commissioning Groups – bodies responsible for how NHS cash is spent locally

The frail elderly man with terminal bone cancer, simvastatin discount card dementia and emphysema – too sick to breathe properly and in constant pain. The 97-year-old Second World War veteran, who risked his life for his country on D-Day, whose health was in rapid decline. And the bed-bound stroke victim, paralysed down one side and covered in agonising bed sores, unable to speak.

All three have one tragic thing in common. They were all denied the vital financial help they needed – and were legitimately entitled to – by a penny-pinching NHS system seemingly more concerned with saving cash than providing the best possible medical care.

That’s the bleak picture which has emerged from readers’ response to last week’s Mail on Sunday exposé of the failings in the NHS system for caring for the sick and elderly, with families forking out, in some cases, hundreds of thousands of pounds out of their own pockets to pay for care which should be provided free on the NHS.

Now campaigners are calling for a crackdown on the rogue NHS officials wrongly refusing this financial aid to sick and elderly people.

Vulnerable people are being denied the vital financial help they need – and are legitimately entitled to – by a penny-pinching NHS system seemingly more concerned with saving cash than providing the best possible medical care. (File image, posed by models)

They have warned that thousands entitled to help from the Continuing Healthcare fund, which covers the costs of long-term social care, are being turned down by Clinical Commissioning Groups (CCGs) – the bodies responsible for how NHS cash is spent locally.

But it means families have been left to pick up the hefty bills – including care home costs that can mount to thousands a month.

As we revealed the plight of desperate families forced to hire expensive legal firms to fight their case, the Continuing Healthcare Alliance, which includes Age UK, Dementia UK and Parkinson’s UK, has called for a shake-up.

Continuing Healthcare is a £3 billion-a-year fund which pays the care bills for patients who have been assessed as needing help with specific medical problems.

For example, dementia patients who suffer agitation, aggression and other behavioural issues which means they need round-the-clock care, or a patient might be bed-bound and suffering pressure sores that need regular attention from a skilled nurse.

Continuing Healthcare funds are earmarked for such cases, and it is estimated that more than half a million applications are received in England alone every year. But charities want the whole process simplified to make it easier for patients to access the money, as the application process is so bureaucratic that fewer than one in five are approved.

Laura Cockram, from the Continuing Healthcare Alliance, said: ‘We have heard so many terrible stories about people not being able to access Continuing Healthcare funding, which can be hugely distressing. This cannot continue.’

In response to the MoS exposè, a torrent of angry families got in touch with their own stories of NHS funds being blocked.

One man, who lost his father to prostate cancer and Parkinson’s disease after he was repeatedly denied Continuing Healthcare funding, said: ‘Afterwards I discovered he should definitely have qualified for it. It’s wrong that people have to spend money on lawyers to fight for what they still might not get.’

Another wrote: ‘My father had terminal bone cancer, dementia and emphysema. He couldn’t walk, was in pain, confused and had breathing problems. 

Yet he was denied Continuing Healthcare funding and we had to pay £1,100 per week for his care in the last months of his life. How ill do you have to be to get this? It’s disgraceful.’

A daughter who had to fight for over a year to secure Continuing Healthcare funds for her 97-year-old father, said: ‘He never asked for a penny from the Government. Yet because he worked hard all his life and was careful with his money, he ended up paying out £188,000 in care costs.

‘We kept it from him – whenever he asked how much it was all costing we avoided the truth.’

A recently retired solicitor even found it impossible to navigate the system. ‘It is definitely designed to put people off a claim, and you receive little or no help from those responsible for the administration of the system,’ he said. ‘My mother has dementia, heart failure, kidney failure and hypothyroidism, yet the NHS turned down our application. I am waiting to hear the results of the appeal but I’m not holding out much hope.’

The Mail on Sunday invited Health Minister Edward Argar and the Department of Health and Social Care to comment on some of the most disturbing examples of patients being denied funding. Both declined, instead issuing a statement that simply said: ‘We set out guidance on the process for determining eligibility.’

Campaigners are calling for a crackdown on the rogue NHS officials wrongly refusing financial aid to sick and elderly people. (File image)

Yet we were told the system is so broken that nurses employed by CCGs to assess if a patient qualifies for NHS Continuing Healthcare funding claim they are pressured by managers into denying sick and elderly people the cash they need.

One source told the MoS: ‘I know nurses who say CCGs have a hidden agenda to not make people eligible – it definitely goes on.’

Many families have succeeded with their claims only after hiring solicitors who know the NHS Continuing Healthcare system inside out. Others complained they were charged thousands of pounds by law firms for ‘just a few emails’.

One family paid a firm of lawyers £1,500 to represent them at an appeal after being refused Continuing Healthcare funding by their CCG, but NHS England said there were no grounds for an appeal so it never took place.

A family member told us: ‘We were disappointed by the news, but we were even more disappointed when the solicitor said they were entitled to keep the £1,500 when they’d done nothing in relation to the appeal other than exchange a few emails with NHS England.’

Last week we highlighted how law firms charge in the region of £4,000 for cases they think they can win. This can easily double if families want a solicitor to represent them at a Continuing Healthcare funding assessment and they then appeal over a lost case. These fixed fees are not refundable, although some firms claim the risks are small as they have a 70 per cent success rate for cases they take on.

Andrew Farley, a solicitor with advisory service Care To Be Different in Manchester, said they offer customers a no-win, no-fee option, but if they succeed they charge 25 per cent of the final award, meaning families pay tens of thousands of pounds rather than a smaller fixed fee.

The Continuing Healthcare Alliance wants families to get a fairer crack of the whip under the new Health and Social Care Act.

Under the Act, the responsibility for Continuing Healthcare funding decisions will pass from local CCGs to Integrated Care Boards – new bodies made up of NHS providers, GPs and local authorities’ social services. 

But the Act also passes supervision of the whole Continuing Healthcare system from NHS England to the Care Quality Commission – the independent regulator which can crack down on failing hospitals and trusts.

Members of Continuing Healthcare Alliance are now pushing for the Care Quality Commission to have the same powers it has over hospitals, such as serving improvement notices or putting them into special measures. Ms Cockram says: ‘That might potentially improve things. NHS England just doesn’t have the teeth to deal with problems and often fails to take the kind of action against CCGs that we would like to see.’

Dave Bracher, of the Spinal Injuries Association – one of the charities demanding change – said it had numerous examples of severely injured patients who should obviously qualify for Continuing Healthcare being denied it. He said: ‘I just hope the Care Quality Commission is prepared to get its hands dirty in order to drive up standards.’

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