BBC recognises issues surrounding Individual Funding Requests

An investigative journalist follows up on PHSOthetruestory’s September 13^th blog “NHS Individual Funding Requests – A postcode lottery”

By David Czarnetzki

Since writing the original blog in September highlighting discrepancies in approval rates for Individual Funding Requests granted by various Integrated Care Boards (ICBs) across England, I was delighted to meet a BBC West Midlands investigative journalist at my home on two occasions.

As can be seen from the chart included in the original 13^th September blog, Shropshire has one of the worst rates for approving Individual Funding Requests, submitted by clinicians, to the local Integrated Care Board over the four-year period ending December 2023. Out of 176 requests made, just 3 were approved.

The main question I raise is “What happened to the 173 patients refused treatment by the local ICB?” We don’t know how many are still alive, what treatment they eventually received and what impact the refusal to grant the request had on their lives. Also, there is no data collected on ethnicity or age. How many people are prevented from working or seeking work as a result of these refusals? The total number of refusals identified within the data obtained from 29 Care Boards runs to just under 45,000 people in the four-year period.

What became abundantly clear to me is the fact that the Department of Health does not collate these figures and therefore, they have no idea of the impact decisions made by various ICBs have on patients.

BBC News has put the following article on their website.

David Czarnetzki found the likelihood of treatment being funded varied dramatically across England

Bongi Msimanga

BBC Midlands Investigations team

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%. 

Christine Williams said it was “heartbreaking” to see her partner suffer. 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.

Facing deficit

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, externally 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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The BBC has also highlighted the issue in their broadcasts on Radio Shropshire and, on their second visit to me, recorded a short piece for BBC Midlands Today, their regional TV news programme. Both were broadcast on 28th February and are available on the BBC website. Comments are welcome here and also on the BBC Shropshire Facebook page.

In a very perverse way, I can take some heart that my funding request was refused, for it prompted me to look more deeply into the issues and write the original blog. Rather than being the exception, I identified that refusal of these requests in Shropshire appears to be the rule.

The journalist wanted to hear my story and how an Individual Funding request, made and refused in 2018, has impacted my life. I do hope this might give others, similarly affected, confidence to come forward and tell their story.

My effort to obtain funding from the Integrated Care Board continues. They keep advising me to contact the Ombudsman (PHSO). As things stand that is just the next rabbit hole. Readers should note that PHSO disclosed to me their policy document:

Service Model Policy and Guidance: main guidance – Version 19.0.

Published on 15^th April 2021, the document runs to some 192 pages. Buried in the document from page 45 is how they will deal with complaints about continuing healthcare. On page 46 it states:

paragraph 2.144:

“If we receive a complaint about a decision where a person has been found not to be eligible after a full assessment, we should check whether there has been a review by the ICB and NHS England. If there has not been a review by NHS England, we should signpost the person making the complaint to NHS England’s review process. (Policy requirement)”

Paragraph 2.246

“NHS England is legally responsible for carrying out independent reviews of ICB’ decisions on whether people should receive funding. NHS England’s reviews are to make sure the decisions made by ICBs were correct.”

Six years on, the funding request made by those responsible for my medical care has never reached NHS England. As a consequence of PHSO policy, the Ombudsman will not investigate, despite my being pointed in their direction by the ICB.

The Epilogue 2^nd March 2025

Since creating the article and taking part in the radio and television programmes two days ago, I can make these observations:

• The BBC journalist, Bongi Msimanga has helpfully included a link to Lord Darzi’s report published in September 2024. I invite readers to click on the link and scroll down to the section “Where and how the money is spent”. You will find his comments on ICBs on pages 77-78 at paragraphs 23-28. It will go some way to explaining the postcode lottery as there is no standard approach adopted by ICBs.
• Both the radio and television segments were of limited time and concluded with the ICB statement or the interview with the Gloucestershire ICB member. Had I been given the opportunity for further reply, I would certainly have countered the comment that variations are caused by rural or urban factors. Repeating the Shropshire cohort of 176 patients and 3 approvals as a sample, in Gloucestershire ICB on their percentages, of 176 patients 121 would have had funding approved yet in South Gloucestershire, which includes Bristol and North Somerset, the approval rate would be the same as Shropshire.
• The BBC, as is their right, has editorial control over what is aired. It was never my intention to have myself as the focus of the segments but the BBC editors felt the issue needed some sensationalism to attract attention hence the headline. I am not in imminent fear of losing our home to fund treatment but I am having to use savings.
• For clarification the CCG, which was in existence in 2018 when the original funding request was refused, admitted in writing there would be a cost saving to the NHS of £1346.80p (that’s at 2018 prices). The procedures carried out privately do not take any longer to perform yet all the indications so far are they prolong the time between interventions by at least 50%.  All this was presented at a meeting with Shropshire ICB on 21^st December 2023 but fell on deaf ears.