By David Czarnetzki
Slightly off-topic, but connected to the obstruction by officialdom frequently encountered by patients, is the subject of Individual Funding Requests.
The system works as follows:
- The GP refers the patient to a consultant/clinical specialist
- The specialist provides NHS treatment under ‘guidelines’ dictated by NHS hierarchy
- If evidence suggests a patient is significantly different to the population of patients with similar needs, the specialist may make an Individual Funding Request to the local Integrated Care Board (ICB), formerly Clinical Commissioning Groups (CCG) which ceased to exist in 2022.
- It is likely that such requests are made because the proposed treatment fall outside ‘Value based commissioning’ policies.
There is a process for considering patients receiving treatment on the NHS that falls outside ‘guidelines’ or ‘value based commissioning’ policies.
Fair enough you might say but what is the reality. Having been the subject of a failed Individual Funding Request in 2018, despite the protestations of my GP who, incidentally, does not qualify as a specialist competent to make the request, I have looked into this particular area, seeking interventions of my local Healthwatch and also the Care Quality Commission, neither of whom could assist.
In the Integrated Care Board Area of Shropshire, Telford and Wrekin, for the four years 2020-2023, the ICB received 176 individual funding requests from clinicians on behalf their patients. The ICB authorised just 3 (2%). I wonder how the health of the remaining 173 is now.
It appears the NHS does not collect this data for the ICB’s in England and nor does it have an inclination to do so. Seeking to identify whether the situation in Shropshire was the norm, I sent a Freedom of Information Request to all 42 ICB’s in order to obtain the information for the four year period. The results of the 29 replies received show wide variations across England as indicated in the graph below. Whilst information has not been gathered from all ICBs, there are enough responses to make some judgements.
It follows the real situation is many patients with specific needs identified by specialists are left without appropriate treatment unless they have the means to pay for it privately. As for people of limited means – hard luck!
The real scandal is that there is no appeal process against the decision of an Integrated Care Board. Intervention by PHSO is extremely unlikely to succeed unless a patient can show maladministration such as incorrect completion of the application form. I suspect that would fall within PHSO’s Tier 1 or 2 on their scale of injustice and be unlikely to merit investigation. Also, if the patient is dissatisfied with their clinician, there is no legal right for a second opinion, nor to request an alternative service provider. (NHS Choice Framework, Section 7)
Integrated Care Boards commission many community health services by issuing contracts to private providers. Where the system falls down is it seems there is no obligation on ICB’s to investigate how well these private providers provide the service, nor is there any obligation for the ICB to investigate complaints about them.
Having attended a fruitless meeting with my local ICB and their private provider late in 2023, I raised the issues with the CQC who in its final response to me in July 2024, admitted they have not have not even started assessing Integrated Care Boards, despite the Boards having been in existence since 2022. Apparently the CQC have not received government approval for their ICB assessment methodology and, until their programme of assessment begins, they have no powers to approach ICBs individually or nationally to request specific information.
There is no need for me to go into details about my own experience, suffice to say that the concerns of my own GP, about the risks to my health not being factored in when the IFR was refused, were ignored but proved correct late in 2022.
I raised the matter of patient safety and failures regarding complaint investigations by PHSO and the CQC with my local MP on Friday 6th September. He has confirmed the issues have been forwarded to the new Secretary of State for Health, Wes Streeting. It will be interesting to see his response.
phsothetruestory 
I cannot see Staffordshire in your graph of requests ? Did you make a request of that County ?
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I contacted all 42 Integrated Care Boards and received replies from 29. Time pressure precluded me from following up the other 13
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I cannot see Staffordshire in your graph of requests ? Did you make a request of that County ?
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Thank you for posting this article on another of the health inequalities facing people whose neglected health by health services has often led to the need for extra treatment.
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Decisions are made by people, who can find it all too easy to hide behind “guidelines”. Guidelines are interpreted by individuals, some of whom have their own agendas, which can include the profit margins of their privately owned companies and, thus, the value of their own bonuses. Cynical? Perhaps, but – sadly – all too common even in the privatised functions that used to belong totally within the NHS. Unless and until statistics such as these are treated seriously, and compared with health outcomes, the damaging effects of poorly designed privatisation in the NHS will continue. Thank you, PHSO-the True Story for doing your bit to raise awareness of this deeply flawed system.
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Thanks for shedding some light on this subject which I suspect many know little about.
What is stark is the disparity, between regions, in percentages of patients successfully referred. If data is not collected and reflected on how can any conclusions be drawn regarding whether particular needs are being met.?
I imagine that doctors in some regions will be reluctant to continue to use this individual request mechanism if most of their historic appeals have been knocked back.
I’m sorry you have lost out on the care you’re seeking – care which your GP believes you need – but you have done a service highlighting the reality of a scheme which sounds considerate on paper.
Thank you
MW
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David Czarnetzki replies:
Thank you MW. It has become clear to me there is tension between what clinicians want to provide for their patients and what NHS bureaucrats deem is affordable. I always seek all internal NHS correspondence about my care, having learned that lesson several years ago. In March 2024 a Consultant Surgeon wrote:
“He has provided copies of the correspondence pertaining to decisions about his individual patient funding requests, which are very enlightening reading and paint a very disappointing picture of the Health Service that spends its money on process and not on care and seems to openly blame patients for decisions made about them and tries to isolate them from the information as to the fact that other patients are in the same scenario. These strategies will be familiar to many people who have had to grapple with large bureaucratic organisations and I have nothing but sympathy for Mr. Czarnetzki and other patients who are having similar struggles to get the treatment they need”.
A copy of this letter is in the bundle sent to the new Secretary of State for Health by my MP.
As far as the bureaucrats running the NHS are concerned, Doctor doesn’t know best.
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This is classic victim blaming David and gaslighting when they know the truth.
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It’s really outrageous that different ICBs should process Individual Funding Requests in such different ways. According to the table. if you live in Gloucestershire you are 35 times more likely to have your funding request met than if you live in South Gloucestershire. That is crazy! This type of injustice just shows that many parts of the NHS are not fit for purpose. Meanwhile the CQC, which is not fit for purpose itself, is tied down by bureaucracy that may prevent it from take any action on this for years. The whole situation would be a joke if it wasn’t so serious for people’s health and wellbeing.
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