Individual Funding Requests
If your GP or Consultant has told you that the treatment you need is not normally or routinely funded by the NHS
then you will have to make an application with the help of your doctor for funding through a process known as an Individual Funding Request (“IFR”).
IFR applications are made to one of two bodies.
Usually you make the IFR application direct to your local area Clinical Commissioning Group (“CCG”) - which is the NHS body tasked with commissioning or funding treatment in your geographical area.
However, it may in some special circumstances be an application made not to your CCG but to the national body responsible for overseeing CCGs - NHS England.
The IFR application is usually (to CCG) and sometimes necessarily (to NHS England) made by your doctor. However, you still have the right to apply on your own account even if that doctor refuses or neglects to make an IFR application.
Clinical Commissioning Groups (“CCG”)
In England CCG commission (or “buy”) health and care services in your local area. CCG are run by your local GPs. GP practices have to belong to a CCG. There is a different system in Scotland, Wales and Northern Ireland. CCG have local area autonomy on which treatments to fund - up to a point. They are independent bodies capable of making their local decisions on which treatments to fund irrespective of what other sometimes neighbouring CCG decide. There are important restrictions on what they may refuse to treat however and there are guidelines on which treatments to fund and when to fund mainly though strategic plans and more commonly now through technical guidance issued by the National Institute for Health and Clinical excellence (“NICE”).
These are the typical areas covered by a CCG.
Elective hospital care
Urgent and emergency care
Most community health services
Mental health and learning disability services
CCG are mandated to work with patients and healthcare professionals and in partnership with local communities and local authorities. On their governing body, CCG have, in addition to GPs, a least one registered nurse and a doctor who is a secondary care specialist. CCG have geographical boundaries that usually follow your local authority boundaries. CCG are responsible for arranging emergency and urgent care services within their boundaries, and for commissioning services for any unregistered patients who live in their area.
NHS England - National Management of the CCG
Since April 2013, in England, CCG are overseen by a body known as NHS England. NHS England oversees the budget, planning, delivery and day-to-day operation of the NHS in England as set out in the Health and Social Care Act 2012 and this includes CCG.
NHS England also has responsibility for commissioning all the specialised services (which they list). The vast majority of the current list of specialised services was inherited from a host of previous specialised services management bodies in the NHS which were disbanded in April 2013. The list is added to from time to time. Your GP or Consultant should know whether the treatment you require is on this NHS England list.
Why do CCG and NHS England ever not routinely fund if the treatment is recommended by a doctor?
The NHS budget is finite and set every year. Choices are made on which treatments to routinely fund and which have to be applied for. If it is not routinely funded the treatment may not appear on your CCG list of approved treatments (sometime called a “clinical formulary”).
These restrictions are given different terminology by different CCG with different wording for the same treatment refused such as for example “not recommended”, or “Condition Black” or “Code Traffic Light Red”. If a treatment for a condition is not on the automatically approved formulary list, then you will have to go on to make an IFR Application.
It may be that where you suffer from a specialised condition, your sought after treatment may not appear on the NHS England specialised list. This could occur if it is particularly new treatment. It may occur if it is thought to be a treatment “not cost effective”.
Just because it is not routinely funded however, does not mean that it will never be funded. It all depends on the circumstances. It is still the case that a treatment not routinely funded in one local area CCG can be found to be on a formulary or list of routinely funded treatments in another even neighbouring CCG. This is sometimes termed in England the “post code lottery”. It is only by applying that you will know whether you will be funded. Do not give up!
Reasons for refusal
You are entitled in law to written reasons for refusal. There are a number of reasons given for refusal to fund treatment.
First and foremost if a treatment is not clinically effective, it is highly unlikely that anyone would advise its use let alone fund it. However, we are concerned principally with cases where the treatment may be clinically effective but we need to try it in some way to see if it works with a particular patient.
The most common reason given in initial refusals is that it is not shown to be a cost effective use of resources. A further and supplemental reason may be that there is no information on it as it is a completely new treatment. However, you may be unlucky enough to not get that level of information in your first refusal letter. Worryingly many letters now simply claim that the matter has not been allowed to even get to the stage of consideration by a Panel of the IFR Committee because it has failed what are sometimes called “Gatekeeper” or “Triage” or “Stage I” or “Stage II” tests or requirements. The different names for this stage are due to the different wordings in each IFR policy for each CCG. If we just term it “Gatekeeper” here in this website for the sake of brevity, please note that you need to translate and make sure you use the right words for your local CCG if it is different.
This Gatekeeper process means an individual usually a pharmacist will have looked at the IFR application provided by your Consultant or GP and found that it is missing vital information or wanting in the information provided. It may state that your circumstances are not “exceptional”. The Gatekeeper may apply a particular wording for what amounts to “exceptional circumstances”. This process is intended to filter out incomplete or improper applications. Unfortunately this means further delay in the process as you will then have to get your Consultant or GP to make further representations in order to get past this filtering test. If your condition is life threatening or seriously harmful, there are usually procedural steps in the process by which a case can be considered as “urgent” or an “emergency” for consideration by the full IFR Panel, bypassing the Gatekeeper.
Why is there still a “Postcode lottery” of treatments around England?
This is due to continued local autonomy of decision making on clinical priorities with the people who decide in each local area. In addition, inconsistencies are increased by having different processes for IFR Policy decisions in different CCG. Some treatments are so new that no one has yet had time to decide on whether to fund it or not. However, even where a treatment is well established, there are differences as to whether it is funded between particular CCG.
IFR Policies – a Brief History
The NHS issued guidance in 2009 to what were then termed Primary Care Trusts (“PCTs”) in England and Local Health Boards (“LHBs”) in Scotland governing the local areas to update and harmonise their IFR processes for making decisions in individual cases. The NHS guidance issued at that time can be found on the Resource Toolkit section of this website. Each PCT was supposed to ensure their IFR Policy was in harmony with the issued NHS guidance. However, although there were many common elements in the IFR processes adopted across the PCTs and LHBs there remained differences between each IFR Policy process for each PCT and LHB.
In April 2013, PCTs were abolished and CCGs took over in considering local IFR applications with important differences to the way CCG as representing the local NHS considered IFRs. NHS England also took responsibility for approving and authorising the way CCG operate and reserved questions of funding in certain specialised conditions to themselves.
The majority of the 221 CCG in England (in Scotland there are 14 LHB) pool resources now to groupings of between 3 to 5 CCG to share a common IFR procedure in that locality. The names of all the available the CCG are listed on this website and the CCG IFR policies are set out to download. Not all of the 221 CCG were “authorised” to operate all NHS services in their locality by NHS England at the start of this process in April 2013. Sometimes this meant the IFR policies and formularies were incomplete. Please note that the CCG IFR policies we have found and produce here on this website are up to date only as at the date they are published – they are subject to change from time to time so please make your own checks on whether they are up to date when you use them.
NHS England – further restrictions on IFR
NHS England has their own procedure for IFR. This has restrictions of its own. They add – as a few CCG do – the caveat or restriction that if there are 5 or more similar applications for your kind of treatment for your kind of condition in any one year, an IFR is not the right process by which NHS England is to proceed. Where that leaves you as a patient is unknown. This is why you have to apply and consider their answer.
Summary so far …
So to summarise, there are some new treatments which have not yet been subjected to formulary or policy decisions. There are some treatments which are not new but which remain not normally funded. If a treatment is not on a formulary or normally funded but a consultant or GP recommends it for a patient in a particular case, each CCG (in Scotland LHB) has an IFR process to decide whether someone in their area should be funded for that particular treatment. An application for an IFR decision has to be made by the patient usually through their Consultant or GP to the CCG unless the condition and treatment are on the NHS England specialised services list. If it appears on the NHS England list and IFR application is made to NHS England.
What are they looking for in the IFR process?
Each IFR process will request evidence of how the applied for treatment will affect clinical outcomes. Some of the evidence sought may be as to how safe the treatment is or how clinically effective it proved in the majority of research cases. Some evidence may be about the experience people have had either here in the UK or around the world in practical use. Inevitably the IFR panel will hear about what the cost of this treatment will be compared to other existing (and perhaps cheaper) alternatives. Some of the evidence will relate to whether you have gone through all the necessary precursor steps to qualify for alternative formulary listed treatments and if not why not. Explanations may be called for. Do not be afeared as you can only provide what is the truth and it is for the people in the IFR panel to decide what to make of it all.
The evidence as to clinical outcome might not be clear in your case, particularly if it is a case where there is little or no direct clinical research (say where there are children involved, or cancer treatments in both of which cases, there are Statutory limitations placed on research due to ethical considerations). Some “social factors” may be important if those also impact upon health of either you or others for whom the CCG has responsibility, such as children or dependants.
How do they consider the case?
A very important section in the IFR process deals with the factors the panel should apply when looking at what is exceptional about your case. Most CCG now apply the following definition of exceptional although some rely on the dictionary definition, and some remain silent and leave it to the panel.
The exceptional test
“Significantly different to the general population of patients with the condition in question
Likely to gain significantly more from the intervention than might be expected from the average patient with the condition”
However, if the treatment is very new, there is likely to be no or very little clinical research evidence and certainly no evidence of experience of use in the public domain. The panel will have to decide without the benefit of a background of evidence and experience. This should be a decision simply on the merits of the clinical case although so often CCG fall into the error of actually not deciding and dressing up the decision as one which simply does not fit their criteria or which is somehow inequitable to others with the same condition when in reality that kind of decision is based on no evidence at all. These are nevertheless difficult decisions for anyone to take and the more information you can provide the better informed everyone in the process is.
Although the NHS tries to consider each patient equally, it is a fact of life that not all patients are equal. The law attempts to reflect some of those differences in circumstance.
Every patient has rights under the Human Rights Act 1998 and the Equality Act 2010. These may impact on how the CCG or NHS England should treat you if you are in one of the categories set out in the Acts. For example, Age, Race, Sex discrimination.
The CCG or NHS England will take account the law, internal guidance and the NHS Constitution.
The NHS Constitution - What is it?
A set of statements of principles, rights, pledges, responsibilities and values of the NHS in England.
There are some similar but smaller scale government declarations in regard to IFR matters in Scotland, Wales and Northern Ireland.
Who does it apply to?
Patients and Staff of the NHS in England.
How did it come about?
January 2009 Government published the NHS Constitution as a “living document” with ability to receive views and consultation on its contents. Initial version consultation closed 4 February 2010.
February 2010. Statute enacted to make the NHS Constitution part of the “NHS”.
“For the Constitution to succeed in its aims, it needs to become part of everyday life in the NHS for patients, the public and staff. Achieving this will require leadership, partnership and sustained commitment over months and years, to raise awareness of the Constitution and weave it into the way the NHS works at all levels. Publishing the Constitution is only the first step in the journey.”
Handbook on the NHS Constitution. P.5. 21 January 2009.
What does it mean?
It provides guidance (where applicable) to be read in concert with the NHS Act 2006, the subsequent Health and Social Care Act 2012 and NHS Regulations made there under.
“The Constitution is a ‘declaratory document’, articulating existing rights and responsibilities in one place.”
Handbook on the NHS Constitution. P.6. 21 January 2009.
The NHS must “take it into account” when performing NHS functions.
What does “take it into account” mean?
It is considered and weighed and if relevant applied along with other guidance and legislation setting out the duties of the NHS body before that NHS body comes to a decision or judgment.
Points of contact with the NHS
There are various parties in the NHS who you need to speak to in order to find out as much as you can about your case and what it is that you need to show.
- The First point of contact for all questions or complaints is the clinician i.e. your GP of Consultant.
The Second point of contact is the Patient Advice Liaison Service (“PALS”).
The Third point of contact is either the Service Provider for your treatment, your hospital or the NHS Trust which is dealing with you directly.
The Fourth point of contact is the CCG.
“The Constitution is not intended to develop a ‘lawyer’s charter’. Where a mistake has been made, the NHS needs to accept something has gone wrong, to apologise for it, and to make sure it does not happen again. The Constitution seeks to encourage a more open environment that allows concerns to be resolved quickly and effectively. “
Handbook on the NHS Constitution. P.11. 21 January 2009.
It is only when all communications with these four points have contact have failed to produce funding for your recommended treatment that you might consider contacting the Health Ombudsman and/or Citizens Advice and/or a Lawyer.
Some technical terms of the NHS
The NHS is one of the largest public employers in the world. It has a bureaucracy which has grown since its inception some 70 years ago. It is uses many technical terms and acronyms – sometimes more than one for the same subject matter.
Who is my clinician?
Your Nurse, GP or Consultant.
Who are PALS?
Patient Advice Liaison Service. They are there to tell you your rights under the NHS and assist in contacting the right people within the NHS.
Who are Service providers?
They can be hospitals, GP practices, other NHS Trusts, private medical services contracted to the NHS.
What is a Health Ombudsman?
An Ombudsman is responsible for investigating and making rulings on the facts of maladministration which leads to unfairness in public life. When a decision has been reached due to maladministration then the Ombudsman may investigate and make a decision on it. However, you cannot complain to the Ombudsman and also seek redress in the courts at the same time.
What is a right?
Here it means those rights which already exist in law, whether because of English Statute Law (or in Scotland Wales or Northern Ireland distinct national laws), Statutory Regulations made by the Health Minister or because of European legislation or because of common law.
Does the NHS Constitution set out all my rights?
Although the handbook states the NHS Constitution brings all “rights” together in one place it does not include everything in law that might apply to a particular person in all circumstances and is certainly not definitive of all that may occur in your dealings with the NHS.
Does the NHS Constitution create any new rights?
Although the Handbook states the NHS Constitution does not create any rights, it may operate to explain those existing rights in a way in which there are legitimate expectations of certain standards of delivery of service.
What is a pledge?
According to the handbook, no more than a “hope”;
“The pledges are not legally binding and cannot be guaranteed for everyone all of the time, because they express an ambition to improve, going above and beyond legal rights.”
Handbook on the NHS Constitution. P.5. 21 January 2009.
Pledges are not legally enforceable by themselves or on their own account. However, in terms of understanding any right in context a pledge may be useful in order to more fully explain how that right should impact on any decision.
What is a responsibility?
Responsibilities are on both sides of any dispute. They are obviously upon the NHS in terms of providing a health service but this does not mean that every patient with a need has that need met. This goes back to the point that there is finite budget and the NHS has balanced decisions to make. There are responsibilities on the patient as well as on the NHS. The most important one in terms of seeking to obtain a fair and just result is the one to be open and honest at all times.
“The Constitution sets out expectations of how patients, the public and staff can help the NHS work effectively and ensure that finite resources are used fairly.”
Handbook on the NHS Constitution. P.5. 21 January 2009.
What if I do not agree with the decision to refuse the IFR application for recommended treatment?
You may Appeal from the IFR Panel to the CCG hierarchy. The IFR process should explain how to do that.
Procedure for patients using this website
Stage 1: Read pages 12 -17 of booklet “Treatment We Need” (see Home Page of this website to download). Substitute CCG for PCT.
Stage 2: Read and Apply the Updates below including whether NHS England is the body to apply to.
Stage 3: Check through the NHS Guidance and see if any of the situations in the Case Law apply to you.
Stage 4: Provide your letter of evidence to your consultant.
Stage 5: Ensure your Consultant has followed Stages 1 to 5 inclusive below.
Procedure for GP and Consultants
Stage 1: Read pages 5 - 22 of “Your Patient’s Right to Treatment” (see Home Page of this website to download). Substitute CCG for PCT.
Stage 2: Read and Apply the Updates below including whether NHS England is the body to apply to .
Stage 3: Download the IFR Policy for your patient’s CCG or LHB area (see Home Page of this website).
Stage 4: Download the application form for your patient’s CCG or LHB area (see Home Page of this website or if not available there, contact your CCG from the list on Authorities and Trusts on the About Us tab).
Stage 5: Include all relevant expert evidence and patient evidence to support the application.
Please contact us by clicking HERE for more information on the application process