Individual Funding Request

If an NHS ADHD Assessment is unavailable in your area, you likely have a right for the NHS to fund an Assessment elsewhere.

 NICE (National Institute for Health and Care Excellence) is a UK Public body that provides “guidance” on clinical practice (the appropriate treatment and care of people with specific diseases and conditions) and the use of health technologies (new and existing medicines, treatments and procedures}.

“Guidance” is in quotation marks because any clinical guidance MUST be followed. The name misdirects because they are less of a guide and more of a rule. This was clarified in a legal case against Thanet CCG, who refused to provide oocyte cryopreservation for a patient. The case concluded that the CCG could not refuse NICE clinical guidelines simply because they disagreed with them. (Case impact details from NICE here).

This matters to ADHD because NICE has issued clinical guidance for ADHD. The guidance, therefore, must be followed, and the services outlined must be given. NICE clinical guidelines have more weight than general guidelines, but both should be followed or risk court challenges.

Some NICE guidelines include timescales for treatment. Sadly, that is not the case for ADHD (we are campaigning to change that), which is why we see a lot of instances of there being an ADHD service but having an abysmal wait list (something we are also campaigning to change).

,If an individual presents with symptoms of ADHD they should be referred:

For children:

If the child or young person’s behavioural and/or attention problems suggestive of ADHD are having an adverse impact on their development or family life, consider:

• • a period of watchful waiting of up to 10 weeks
  • offering parents or carers a referral to group-based ADHD-focused support (this should not wait for a formal diagnosis of ADHD).
  • If the behavioural and/or attention problems persist with at least moderate impairment, the child or young person should be referred to secondary care (that is, a child psychiatrist, paediatrician, or specialist ADHD CAMHS) for assessment. [2008, amended 2018]

1.2.8  If the child or young person’s behavioural and/or attention problems are associated with severe impairment, referral should be made directly to secondary care (that is, a child psychiatrist, paediatrician, or specialist ADHD CAMHS) for assessment. [2008]

For adults:

Adults presenting with symptoms of ADHD in primary care or general adult psychiatric services, who do not have a childhood diagnosis of ADHD, should be referred for assessment by a mental health specialist trained in the diagnosis and treatment of ADHD, where there is evidence of typical manifestations of ADHD (hyperactivity/impulsivity and/or inattention) that:

• • began during childhood and have persisted throughout life
  • are not explained by other psychiatric diagnoses (although there may be other coexisting psychiatric conditions)
  • have resulted in, or are associated with, moderate or severe psychological, social and/or educational or occupational impairment.

The process of diagnosis is as follows:

A diagnosis of ADHD should only be made by a specialist psychiatrist, paediatrician or other appropriately qualified healthcare professional with training and expertise in the diagnosis of ADHD, on the basis of:

• • a full clinical and psychosocial assessment of the person; this should include discussion about behaviour and symptoms in the different domains and settings of the person’s everyday life and
  • a full developmental and psychiatric history and
  • observer reports and assessment of the person’s mental state.

A diagnosis of ADHD should not be made solely on the basis of rating scale or observational data. However, rating scales such as the Conners’ rating scales and the Strengths and Difficulties Questionnaire are valuable adjuncts, and observations (for example, at school) are useful when there is doubt about symptoms.

For a diagnosis of ADHD, symptoms of hyperactivity/impulsivity and/or inattention should:

• • meet the diagnostic criteria in DSM‑5 or ICD‑10 (hyperkinetic disorder; but exclusion based on a pervasive developmental disorder or an uncertain time of onset is not recommended) and
  • cause at least moderate psychological, social and/or educational or occupational impairment based on interview and/or direct observation in multiple settings and
  • be pervasive, occurring in 2 or more important settings including social, familial, educational and/or occupational settings.

As part of the diagnostic process, include an assessment of the person’s needs, coexisting conditions, social, familial and educational or occupational circumstances and physical health. For children and young people, there should also be an assessment of their parents’ or carers’ mental health.

ADHD should be considered in all age groups, with symptom criteria adjusted for age-appropriate changes in behaviour.

In determining the clinical significance of impairment resulting from the symptoms of ADHD in children and young people, their views should be taken into account wherever possible.

England: The ADHD UK guide to submitting an Individual Funding Request

Requirements for an Individual Funding Request (IFR) Process to apply:

1. Your clinician (usually your GP) needs to recommend that you have an ADHD Assessment. (Note: They need to follow the NICE guidelines. If you believe they are not doing so, then you have the right to have that decision reviewed via the standard complaint process).
2. Confirm with your GP that there is no ADHD Assessment Service in your area. This only applies if the service is not offered – it does not apply if there is a service with a long waitlist. Your GP must provide you with information on this under the NHS constitution. Notably: “You have the right to be given information about the test and treatment options available to you.”

Right to Choose

1. You may find it quicker and more suitable to use Right to Choose instead. Our complete information on your Right to Choose is here. Right to Choose is available solely in England.

Find your local IFR process

1. Your local Integrated Care Boards manage your NHS healthcare. You can find your local Integrated Care Board below with links customised to find your Board’s most relevant IFR information.

If there is no local guidance you should review the NHS England national guidance and ask your GP instead

Follow the IFR Process

1. Individual Funding Requests must be submitted by a clinician (usually your GP); however, you have the right to insist they do so. Your clinician independently decides that an Assessment is needed (as per the NICE guidelines). They can then submit an IFR on your behalf. If they decline to do so you have the option to submit to challenge that decision through the process of making a complaint about them.

Wales: The ADHD UK guide to submitting an Individual Funding Request

Background Information

• NHS Wales follows the NICE guidelines. You, therefore, have a right to an ADHD Assessment Service.
• NHS Wales calls the process an “Individual Patient Funding Request” [IPFR]
• The Welsh Government reviewed the process in 2018. Details here.

Requirements for an Individual Patient Funding Request (IPFR) Process to apply:

1. Your clinician (usually your GP) needs to recommend you have an ADHD Assessment. (Note: They need to follow the NICE guidelines. If you believe they are not doing so, then you have the right to have that decision reviewed via the standard complaint process).
2. Confirm with your GP that there is no ADHD Assessment Service in your area. This only applies if the service is not offered – it does not apply if there is a service with a long waitlist. Your GP must provide you with information on this under the NHS constitution. Notably: “You have the right to be given information about the test and treatment options available to you.

Right to Choose

To avoid confusion “Right to Choose” does not apply in Wales. (This is something we would like to change).

Find your local IPFR process

1. Your local Health Boards manage your NHS healthcare. You can find your local Health Board below.ad.

Follow the IPFR Process

Individual Funding Requests must be submitted by a clinician (usually your GP); however, you have the right to insist they do so. Your clinician independently decides that an Assessment is needed (per the NICE guidelines). The need to submit an IPFR is separate from the clinical need. Your clinician can then submit an IPFR for you. If they decline to do so, you can challenge that decision by making a complaint about them.

Scotland: Individual Funding Requests and ADHD

Background Information

• NHS Scotland has clinical guidance from SIGN instead of NICE. NHS Scotland “takes note” of NICE guidance but does not have to follow it.
• SIGN had guidance “SIGN 112: Management of attention deficit and hyperkinetic disorders in children and young people (October 2009)” We understand it to have since been withdrawn.
• There have been calls for new guidance. This review was rejected in January 2019 on the following grounds: “The conclusion of a multidisciplinary group meeting, held 30 October 2018, including the proposers, and proposers of a guideline on management of
  ADHD in adults, was that for ADHD, there are real and significant concerns about service delivery and configuration which have been well-described by all those present, however these would not be impacted by a summary of the evidence on interventions (and any evidence needs which may exist currently have been addressed by NICE’s comprehensive and up to date review). [This would infer NICE is being followed, however, we do not believe that has a legal standing].
• The Scottish Government published in Sept 2021 a “National Neurodevelopmental Specification for Children and Young People: Principles and Standards of Care“. Points of note:
  • “Services should be available for all children and young people who are aged 0 – 18 years, and young adults aged 18-24 (and up to age 26 for care experienced people).”
  • “Offer a first appointment to all children and young people who have been identified (e.g. by a GP, a Named Person or a Children’s Planning meeting) as needing a neurodevelopmental assessment. This first appointment should be as soon as possible and no later than 4 weeks from identification of need.”
• The Royal College of Psychiatrists in Scotland has issued “ADHD in adults: good practice guidelines” (2017).
• The Scottish Government has published its Mental Health Strategy 2017-2027. This has noted the need for significant improvements but there is no specific mention of ADHD.

Scottish Equivalent of an Individual Funding Request

We cannot identify an equivalent of an Individual Funding Request for individuals in Scotland looking for Assessments of ADHD where their local NHS service does not offer a service. This is something we want to change. If you want to help us lobby for change please donate or fundraise for us. If you have further information on this please contact us.

Right to Choose

To avoid confusion “Right to Choose” does not apply in Scotland. (This is something we would like to change).

Find your local NHS Services

1. Your local Health Boards manage your NHS healthcare. You can find your local Health Board below.

Northern Ireland: The ADHD UK guide to submitting an Individual Funding Request

Background Information

• NHS Northern Ireland has a process to adopt NICE guidelines. It may decline or alter guidance depending on the needs of Northern Ireland.
• In 2018 the Department of Health Northern Ireland formally adopted the NICE guidelines on ADHD.
• You, therefore, have a right to an ADHD Assessment Service.
• NHS Northern Ireland calls the process an “Individual Funding Request” [IFR]
• The IFR process in NI was overhauled in 2020 (new policy document here) which created an updated process available here.

Requirements/Process for an Individual Patient Request (IFR):

1. You need to see a hospital consultant who in turn needs to recommend you have an ADHD Assessment.
2. There cannot be “an existing commissioning policy for funding the requested treatment” I.e. It cannot be otherwise available to you from NHS Northern Ireland). This would only, therefore, apply if there is no suitable ADHD Assessment Service in Northern Ireland.
3. The Hospital Consultant would then person responsible for making an IFR application on your behalf.

Right to Choose

To avoid confusion “Right to Choose” does not apply in Northern Ireland. (This is something we would like to change).