Patient fears losing home over funding 'lottery'

A retired police officer has said he faces the possibility of selling his home to fund ongoing pain relief treatment he used to get for free on the NHS.

David Czarnetzki, from Shropshire, has a chronic back condition and for six years received treatment on the NHS using radio waves to deaden specific nerves.

Since his treatment funding was stopped, the 76-year-old has paid £6,000 to continue privately and claims he is a victim of an NHS "postcode lottery" affecting thousands of patients across England.

Shropshire, Telford and Wrekin Integrated Care Board (ICB) said it was inappropriate to comment on individual cases, but that applications for non-routine funding were carefully considered.

Mr Czarnetzki is now taking his case to the county court hoping to reinstate his NHS funding and recoup his costs.

However, frustrated by the ICB's decision, the former police sergeant used his investigation skills to find out how other patients needing Individual Funding Requests (IFRs) - covering non-routine procedures - fared across the country.

Out of the 42 ICBs across England, 29 replied to his Freedom of Information request.

The responses, seen by the BBC, showed the Shropshire ICB approved less than 2% of requests between January 2020 and December 2023, while in Gloucestershire 69% were accepted.

"It's staggering that you're more likely to get funding for certain treatment depending on where you live," Mr Czarnetzki said.

His investigation showed about 45,000 applications by GPs were denied in that period, although the true figure could be much higher with 13 ICBs failing to provide data.

"It's been heartbreaking seeing David go through excruciating pain," his partner Christine Williams said.

"I feel helpless and despite the challenging circumstances David continues to fight for change not just for himself but for tens of thousands across the nation."

Presented with the data, the Department of Health said the NHS was "broken" but the government had a "10-year plan to build a health service fit for the future".

Mr Czarnetzki was diagnosed with arachnoiditis in 2012, a painful condition that causes inflammation around the spinal cord and spinal nerve roots.

Radio frequency ablation injections helped ease the pain, and initially, he was prescribed them through his GP to have at a local hospital.

The procedure uses radio waves targeting nerves to stop a pain signal being sent to the brain.

From 2013, however, the funding system changed, moving the money from hospitals to community commissioners.

It meant GPs had to make special requests for treatments not routinely covered by the NHS.

ICBs took over the role from Clinical Commissioning Groups in 2022.

Treatments covered by an IFR can be anything from certain cancer drugs to specialised surgery.

The ICB panel is made up of clinicians, public health experts and lay members led by an independent chair.

But the application process can take months and application success rates vary dramatically.

"In the old system I used to get injections every six to nine months, but overnight my life was turned upside down," Mr Czarnetzki said.

The application made by his GP and consultant was turned down in 2018 and he was refused the chance to appeal at the time, although the clinicians asked the ICB to reconsider.

Radio frequency ablation injections are offered in many parts of the country, but it is unclear how many applications for that specific procedure have been granted.

Mr Czarnetzki was instead offered strong pain killers, eight tablets a day. Concerned about the long-term effects of taking so many opioids, he later chose to go private.

His investigation revealed his local ICB had one of the lowest rates of approving funding requests in England - just three out of 176.

While the Gloucestershire ICB ranked the highest with 69%, neighbouring Bristol, North Somerset and South Gloucestershire ICB, like Shropshire, approved just 2%.

However, Gloucestershire, which faced thousands more requests than Shropshire, was not simply an outlier.

Lincolnshire ICB approved 65% of requests, while Bath & North East Somerset and Dorset ICBs both also approved more than 50%.

Mr Czarnetzki said: "The reason I'm telling my story is because I'm worried about the 45,000 or so people in England who have been denied the care their GPs feel they need."

His partner said she could not bear to watch him suffer and see his mobility affected, knowing others might be afforded identical treatment.

Both pensioners, the couple fear they could lose their home in Church Stretton if they need to continue funding private treatment.

Rachel Power, chief executive of the Patients Association, said Mr Czarnetzki's case was not an isolated one.

"We often hear from patients who struggle to get the treatment they need," she said.

"Our surveys show that often where you live can have an impact on the treatment that is available to you."

Ms Power said patients needed to be aware of their right to a second opinion, adding that they should be able to access the right care regardless of where they lived.

The Shropshire, Telford and Wrekin ICB said applications were carefully considered by a panel for evidence that a patient's condition was "exceptional", as per its policy.

It added that it had to ensure the most effective use of funds.

It is also under huge pressure financially. In January, it said it was on track for a deficit of between £20m and £30m by the end of the financial year, and was drawing up an action plan.

The ICB said patients were entitled to a review of the panel's decision, but Mr Czarnetzki said his experience meant he did not have faith in the appeals process, adding that he had also struggled to get his complaints heard.

As part of a damning report into the overall state of the NHS in England, Lord Darzi said the roles and responsibilities of ICBs needed to be clarified as their interpretation varied across the country.

The watchdog that should be assessing them has currently "paused" that element of its work.

The Care Quality Commission told the BBC the decision would "free up capacity to carry out more assessments to modify its current assessment framework".

The government said it knew there was more to be done to improve the handling of NHS England complaints, and that it would continue to look for ways to improve the process.

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