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Mental Capacity.

When assessing the mental capacity of someone with Fetal Alcohol Spectrum Disorder (FASD) why should it be with an approved 'FASD Informed' Professional?

 

'FASD is the most severe of the neurodevelopmental disorders in terms of its far-reaching impact on functioning across the lifespan, and requires a unique approach to support and understanding.

Those who are not appropriately trained or knowledgeable can often make assumptions due to the fact that many individuals with FASD can superficially present as more able than they actually are or where their ‘symptoms’ are misinterpreted as ‘behaviour’ due to spiky cognitive and neurodevelopmental profile.

There is also often the assumption that symptoms of FASD will improve over time, or a child will outgrow their emotion regulation challenges or poor adaptive functioning for example, when unfortunately, the opposite is true; the developmental gap continues to widen and diverge away from the norm over the course of childhood.

This necessitates increased, rather than decreased, need for support and services. FASD must be understood as an enduring brain injury, similar to any other acquired brain injury.

 

Fetal Alcohol Spectrum Disorder (FASD) is a permanent brain injury to the brain. FASD is a neurodevelopmental disability which affects the way a person understands communication and interacts.

 

With up to 428 co-occurring neurodevelopmental conditions common to FASD, spanning across 18 of 22 chapters of the International Classification of Diseases (ICD) -10. The most prevalent disease conditions include congenital malformations, deformities, and chromosomal abnormalities, mental and 'behavioural' disorders.'

Dr Cassie Jackson Consultant Clinical Psychologist 

​Mental Capacity Assessment

​​'There are certain decisions an individual can only agree to if they have mental capacity. Other decisions can only be made on someone’s behalf if they are assessed as lacking mental capacity.

 

It is often confusing to work out whether someone has mental capacity. The MCA applies to people aged 16 and over.

 

The MCA starts with the assumption that everyone has mental capacity and if an individual is struggling, then they should be helped to make their own decision rather than have the decision made for them.

 

Making an unwise decision doesn't mean someone lacks capacity. Under the MCA, a person lacks mental capacity if they cannot do 1 or more of the following:

 

• understand the information relevant to the decision

• retain that information for long enough to make the decision

• use or weigh up that information as part of the process of making the decision • communicate their decision in any way

 

Even if someone is deemed to lack full capacity, those making decisions on their behalf must act in their best interests, and their wishes, aspirations and views should be considered and included in any best interests meeting.

Who carries out assessments under the Mental Capacity Act?

 

The Act is designed to empower those in health and social care to assess mental capacity themselves, rather than rely on expert assessments by psychiatrists or psychologists.

 

Although, in cases involving complex or major decisions, a professional opinion from a GP, a consultant psychiatrist or psychologist is often appropriate.

 

All assessors should consider the Mental Capacity Act 2005 Code of Practice (the Code) and the NICE Guidelines On Decision Making And Mental Capacity (the Guidelines).

 

4.51 of the Code states that if the person has a particular condition or disorder, it may be appropriate to contact a specialist (for example, consultant psychiatrist, psychologist or other professional with experience of caring for patients with that condition).

 

Contact details of FASD Informed Clinical leads in the UK can be found by contacting us below or one of the FASD UK Alliance. 

 

Assessments of capacity are time and decision-specific. So, a person may lack capacity in one area, like managing finances but have capacity in other areas. This means that different people will be involved in assessing someone’s capacity to make different decisions at different times.

 

If there is a disagreement, the Court of Protection will decide whether a person has mental capacity and the person who is challenging the assessment can apply directly to the Court of Protection by submitting expert evidence using a COP3 Form.

 

You do not need a solicitor, but you may want to seek legal guidance. Capacity and needs assessments for individuals with FASD as your young adult transitions into adulthood there may be various assessments of need and capacity.

 

This may be a formal transition assessment or a mental capacity assessment for an LPA, or it could be what seems like an informal ‘chat’ by social services for supported living.

 

Often, these capacity assessments and needs assessments are carried out by social service safeguarding teams, the police, government agencies (such as the DWP), and even professionals, (such as GPs) who have no, or very little understanding of FASD.

 

Assessors often do not have the skills or experience or knowledge to dig deeper to recognise that abilities are often superficial, and as a result may not accurately assess capacity, especially if your young adult is articulate and comes across as capable. For example, your teenager may be able to physically cook, clean, wash, book an appointment, self-medicate, but ONLY by being adult led and supervised and when being engaged.

Lived-experience shows that the ’hidden’ nature of FASD can sometimes lead to significant risk to individuals with FASD as the ‘experts’ deem a teenager with FASD to have capacity in situations where they may not.

 

The individual may be left in a vulnerable situation without the support they need and the carers may be accused of being overbearing. Those who carry out capacity and needs assessments on individuals with FASD should have specific training to understand the nuances of the disorder and interpret behaviours accurately.

 

You should refer the assessor to your local FASD UK Alliance organisation for input if they are not appropriately trained in FASD and they need support.

 

Deprivation of Liberty

 

The liberty of an adult aged 18 and over can only be taken away in very specific situations.

 

The MCA calls this a ’deprivation of liberty’. Being deprived of liberty means that someone is prevented from doing anything without continuous supervision. A deprivation of liberty should only be used if it’s the least restrictive way of keeping someone safe.

 

If an individual aged 18 and over is in a hospital or care home, liberty can normally only be taken away if health professionals use the procedures called the Deprivation of Liberty Safeguards (DoLS) which provide a legal framework to balance the need for care and treatment with the fundamental right to freedom and autonomy.

 

If an individual is aged 16 or over, lives at home, in supported accommodation or in a shared lives placement it is only the Court of Protection who can decide to deprive someone of their liberty. The Court will appoint deputies to act on the individual’s behalf if they are unable to make decisions about personal health, finance or welfare'.

Written by Velma Eyre; Lawyer. 

This fact sheet is for information only and is not intended to constitute legal advice. (May 2025)

Important Supporting Documents

'A number of people will be under a formal duty to have regard to the Mental Capacity Codes of Practice: professionals and paid carers for example, or people acting as attorneys or as deputies appointed by the Court of Protection. But for many people, the most important relationships will be with the wide range of less formal carers, the close family and friends who know the person best, some of whom will have been caring for them for many years. The Code is also here to provide help and guidance for them. It will be crucial to the Code’s success that all those relying upon it have a document that is clear and that they can understand. I have been particularly clear that we do all we can to achieve this.'

Lord Falconer, Secretary of State for Constitutional Affairs and Lord Chancellor

Mental Capacity Act 2005 Code of Practice

'Because FASD has lifelong effects, a staged management plan may be needed to anticipate upcoming problems at planned intervals and revision should be considered at all transition stages in the person's life. A management plan also helps people with FASD, their families, carers and service providers to understand and address the associated challenges. The plan helps to coordinate care across a range of healthcare professionals, as well as education and social services, and improves outcomes.' 

NICE Quality Standards FASD 

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©FASD Informed UK

Email: info@fasdinformed.co.uk

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The Facts...

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Flutuating Capacity

Fluctuating capacity and the law: quick guide

'Fluctuating capacity refers to situations where a person’s decision-making ability varies. The person may lack capacity at the time of one assessment, but the result may be different if a second assessment is undertaken during a lucid interval. There are many different conditions where fluctuating capacity may occur, for example, as a result of mental illness, dementia or an acquired brain injury.

The test for capacity in the Mental Capacity Act 2005 (MCA) is contained in section 2, which sets out that for the purpose of the act:

 

“A person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter, because of an impairment of, or a disturbance in the functioning of, the mind or brain.

 

” Section 3 explains that being “unable to make a decision” means that the person is unable to: understand the information relevant to the decision; retain that information; use or weigh that information as part of the process of making the decision; or communicate their decision (whether by talking, using sign language or any other means).

 

There are other relevant provisions about capacity in sections 1 and 2 of the MCA:

 

  • section 2(2) adds that it does not matter whether the impairment or disturbance is permanent or temporary;

 

  • section 1(2) directs that a person must be assumed to have capacity unless it is  established that they do not;

 

  • section 2(4) says that any question of whether a person lacks capacity must be decided on the balance of probabilities; and section 1(4) adds that a person is not to be treated as unable to make a decision merely because they make an unwise decision.

 

These provisions reflect the long-established principle that capacity is “decision specific” and must be assessed in relation to the particular decision that needs to be taken, rather than any assessment being made of the person’s ability to make decisions generally.

 

It follows that a person may lack capacity in relation to one matter but not in relation to another. Capacity is also “time specific” and must be assessed at the time the decision needs to be made.

While the test for capacity in section 2 appears relatively straightforward and easy to understand, in reality the assessment of capacity can sometimes be extremely difficult, especially when the person’s capacity fluctuates.'

'Each case must be treated on its merits. Managing authorities should keep all cases under review: where a person subject to an authorisation is deemed to have regained the capacity to decide about the arrangements made for their care and treatment, the managing authority must assess whether there is consistent evidence of the regaining of capacity on a longer-term basis.

 

This is a clinical judgement that will need to be made by a suitably qualified person. Where there is consistent evidence of regaining capacity on this longer-term basis, deprivation of liberty should be lifted immediately, and a formal review and termination of the authorisation sought.

 

However, it should be borne in mind that a deprivation of liberty authorisation carries certain safeguards that the relevant person will lose if the authorisation is terminated. Where the regaining of capacity is likely to be temporary, and the authorisation will be required again within a short period of time, the authorisation should be left in place, but with the situation kept under ongoing review.

 

Therefore, the two codes of practice address different considerations. The MCA code of practice is, in reality, more focused on when to assess an individual’s ability to make a single decision, and how to ensure that they are best supported to enable them to do this.

 

The Deprivation of Liberty (DoLS) code of practice focuses on what should happen where an assessment is required of a person’s ability to make decisions on an ongoing basis; essentially, it tries to ensure a more pragmatic approach by suggesting that an authorisation can remain in place where the regaining of capacity is likely to be temporary, and the authorisation will be required again within a short period of time.'

Tim Spencer-Lane; Tim is a lawyer who specialises in mental capacity, mental health and social care law. 

Fluctuating capacity and the law

Further reading source by kind permission Community Care Inform Adults © MA Education 2019

Myth Buster

Myth buster – Demystifying the terms ‘decisional / executive capacity’ and ‘executive functioning / dysfunction’ in the context of the Mental Capacity Act (2005)

Authors - Dr Emma Cameron (Highly Specialist Clinical Psychologist, National Hospital for Neurology and Neurosurgery)

& James Codling (MCA/DoLS Training and Development Manager, Cambridgeshire County Council)

Decisional
Executive Function

‘For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.’

 

'In our experience and based on some research that we are undertaking in this area, we have found that many professionals in both the health and social care sector have artificially created a ‘rule’ that suggests that ‘material time’ means only considering a person’s capacity to make a specific decision at the time of the conversation with the person, and do not always consider observational real world evidence (from families / carers or other professionals) as part of the capacity assessment undertaken, even when this may be applicable to the decision in hand.

 

This rule around ‘material time’ is a falsehood, and a potentially dangerous one at that. Neither the Mental Capacity Act nor the MCA Code of Practice suggest that capacity assessments have to be an artificially and abstract time slice that can only be determined with the person in an interview or face to face meeting/assessment (See paragraphs 4.21 and 4.21 of the MCA Code of Practice).

 

The wording is ‘material time’, and we have to understand that what constitutes ‘material time’ will depend on the type and nature of the decision/matter that you are supporting a person with. ‘Matters’ and ‘decisions’ can either be:  just decisional (in the moment) or  decisional and performative in their nature (where applying the information takes place also outside of the discussion)'.

A simple example of a decision/matter which is only ‘decisional’ would be determining whether a person had capacity to consent to support with their personal care on that day in that moment. We are in this instance supporting the person to make a decision in relation to a ‘task’ that is happening in the here and now at the ‘material time’, and the person would not need to understand, retain or use or weigh this information any longer than the task required. This would be the same as creating a LPA or Will for example.

 

However, if you look at many of the decisions that social workers and their colleagues in particular are supporting people with, these are rarely just ‘decisional’, tending to constitute both ‘decisional’ and ‘performative’ considerations.

 

This means that the person will have to be able to understand, retain and use or weigh the relevant information not only in the assessment, but also outside of the assessment and be able to apply the relevant information outside of that abstract conversation: i.e. at the time that they themselves need to make the decision.

 

By way of example, this would potentially be the case for social care practitioners when we are considering capacity in relation to:

  • Care and support arrangements (especially in the context of cases involving self-neglect) 

  • Managing finances

  • Managing medication 

  • Decisions about sexual relations (please see Court of Appeal decision in A Local Authority v JB [2020] EWCA Civ 735 by way of an example) 

  • Managing safety online 

  • Capacity to conduct court proceedings (please see the Court of Protection decision in TB v KB and LH [2019] EWCOP 14 by way of example)

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Decisional and executive capacity

This leads us nicely into the terms decisional and executive capacity. The first point that we want to make is that these terms are not mentioned in the MCA nor MCA Code of Practice, and we would strongly advise that professionals keep to the clear language of the MCA in any recorded capacity assessment.

 

However, they are important contextual terms to use when we want to explain the challenges of assessing a person’s decision making capacity when they can seemingly ‘talk the talk’ (decisional capacity), but can’t ‘walk the walk’ (executive capacity), especially when we believe that this inability to ‘walk the walk’ may be ‘because of an impairment of, or a disturbance in the functioning of, the mind or brain’. The terms decisional and executive capacity (sometimes worded in other forms) have been part of academic discussions in the health arena for at least 40 years. In the 2010 paper ‘Patient Autonomy for the Management of Chronic Conditions: A Two-Component Re-conceptualization’ the authors summarised the issue thus:

‘The clinical application of the concept of patient autonomy has centred on the ability to deliberate and make treatment decisions (decisional autonomy) to the virtual exclusion of the capacity to execute the treatment plan (executive autonomy)… Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry out tasks associated with chronic care. …[Therefore] assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision making and autonomous execution of the agreed-upon treatment plan.’

The terms decisional and executive capacity really came to the attention of most social care practitioners with the excellent SCIE paper ‘Self-neglect and adult safeguarding: findings from research’ (2011). The following quote perfectly articulates how the authors of this paper were identifying the same problems mentioned above:

 

‘The literature reveals that capacity is a complex attribute, involving not only the ability to understand the consequences of a decision but also the ability to execute the decision. Where decisional capacity is not accompanied by executive capacity, and thus overall capacity for autonomous action is impaired, ‘best interests’ intervention by professionals to safeguard wellbeing may be legitimate. Yet executive capacity does not routinely figure in capacity assessments, and there is a risk that its absence may not be recognised. There is concern too that capacity assessments may overlook the function-specific nature of capacity, with the result that apparent capacity to make simple decisions is assumed in relation to more complex ones.’

We believe that one of the reasons why the issues associated with executive capacity are still often ignored in capacity assessments is because either:

a) professionals are creating an incorrect interpretation of what is meant by ‘material time’ or

b) a lack of confidence or potentially training in how one would go about conducting and/or recording such issues in their capacity assessments.

 

Executive functioning / dysfunction

 

Executive functioning is an umbrella term used to identify a wide range of cognitive functions commonly thought to be situated in the frontal lobes of the brain. This includes for example; insight, attention, planning, organisation, initiation, generating ideas, inhibition, control of behaviours and emotions, problem-solving, evaluation, judgement and decision-g skills.

 

If these executive functions do not develop normally, or are damaged by brain injury or illness, this can cause something called 'executive dysfunction.

 

' Cognitive impairments associated with executive dysfunction cause significant challenges for the person, but also for individuals offering that person support, as they are typically less visible and potentially more subtle than other impairments and can be hard to quantify or evidence. As someone with executive functioning problems will not have all of the myriad of difficulties noted above, this means that a person might have good insight/ awareness into a particular problem that you are talking about and plan in conversation around it – but might not be able to organise themselves to initiate this plan or control their behaviour in the moment. If the person has good language skills and can talk around the issue competently, without a performative aspect to the capacity assessment we might wrongly assume that the person has capacity when they cannot in reality ‘walk the walk.’

 

Let’s just take insight, or awareness, as an example of one way an executive functioning problem could ‘skew’ capacity assessment results without a performative part to the capacity assessment. A simple and commonly used model of awareness is the Pyramid Model of Awareness (Crosslon et al., 1989). It describes awareness as having three levels, which are interdependent and build upon the levels below it:

​1. The base level, ‘intellectual awareness,’ is where the individual has knowledge of a deficit. For example, a client might tell you “I have a memory problem”.

 

2. The second level, ‘emergent awareness,’ is where the individual has knowledge of deficits and can describe what these difficulties might mean. For example, a client might tell you “I have a memory problem and this means I struggle to take in and remember information, or do things that are in my day-to-day routine”.

 

3. The third level, ‘anticipatory awareness,’ means that the individual is additionally aware of, and able to anticipate and discuss, what this might mean in everyday life. For example, a Anticipatory awareness Emergent awareness Intellectual awareness client might say “I have a memory problem, which means I struggle to take in and remember information or complete parts of my day-to-day routine. Therefore I will use a notes system on my fridge to remind me to eat and to remind me to check the dates of food before I eat them”.

 

Note, at none of these levels does the client have to show that they can actually use the knowledge about their deficit (in this case relating to their memory) to change what they do in practice (when they ‘walk the walk’) by, for example:

i. Making notes in the first place and then

ii. Using the notes so they do remember the tasks that they need to complete. In the context of the MCA this can be linked back to not only the person’s ability to ‘understand the relevant information’ at the time it is required, but also the ability to ‘use’ the relevant information to make the decision at the time it is required. If a capacity assessment just takes the form of interviews / abstract conversations this would mask the individual’s deficits as the person can ‘talk the talk’ but potentially may not be able to ‘walk the walk.’

 

This presentation in the field of brain injury is known as the ‘frontal lobe paradox’ (click here for an excellent article on this). Assessing capacity for people presenting in such a way is therefore best done by using the ‘articulate/ demonstrate’ method, which requires the person to both tell you how they would make an informed decision and also demonstrate this in practice. I.e. having a performative aspect to the capacity assessment. Furthermore, as the British Psychological Society guidance ‘What Makes a Good Capacity Assessment’ suggests:

 

‘… Is [the person] able/unable to use and weigh information in the balance, as part of the process of making the decision. Provide evidence of the person’s rationale for any reasoning that s/he draws on to weigh information in the balance (e.g. a person making a decision to give a financial gift to someone may weigh up what the recipient has done for the person in the past against the impact of the loss of the money on the person’s quality of life. Provide evidence that the person can apply this reasoning to their own personal situation (i.e. not just abstractly weigh up the risks and benefits, but rather be able to see how these could relate to their circumstances or needs).’ suggests:

 

‘… Is [the person] able/unable to use and weigh information in the balance, as part of the process of making the decision. Provide evidence of the person’s rationale for any reasoning that s/he draws on to weigh information in the balance (e.g. a person making a decision to give a financial gift to someone may weigh up what the recipient has done for the person in the past against the impact of the loss of the money on the person’s quality of life. Provide evidence that the person can apply this reasoning to their own personal situation (i.e. not just abstractly weigh up the risks and benefits, but rather be able to see how these could relate to their circumstances or needs).’

 

It is important to note that this is a simplified overview of the terms executive functioning and executive dysfunction, but it has hopefully given you an overview of what the two terms mean. Unlike the phrases decisional and executive capacity, executive functioning and executive dysfunction are recognised clinical terms and as such should only be used when supported by clinical evidence, typically from clinical psychologists, psychiatrists or occupational therapists.

It is also important to note that, should executive functioning problems be mentioned in clinical reports, this alone is not evidence of a lack of capacity. As can be seen above, executive functioning (and indeed brain functioning) is highly complex and is interrelated to other thinking skills. Many individuals with executive dysfunction are still able to make a wide range of capacitous decisions, especially when the person has all practicable support to do so. Any doubts about capacity can take clinical evidence about executive functioning into account as part of the decision-making process, and indeed this would help indicate how to go about conducting the capacity assessment, but would not indicate a lack of capacity in and of itself.

Considering all of this in practice Rather than re-inventing the wheel, the 39 Essex Chambers ‘Mental Capacity Guidance Note: A Brief Guide to Carrying out Capacity Assessments – June 2020’ offers some very helpful guidance on how to consider this in practice:

 

  • You can legitimately conclude that a person lacks capacity to make a decision if they cannot understand or use/weigh the information, that they cannot implement what they will say that they do in the abstract, or (if relevant) that when needed, they are unable to bring to mind the information needed to implement a decision;

BUT 

  • You can only reach such a finding where there is clearly documented evidence of repeated mismatch. This means, in consequence, it is very unlikely ever to be right to reach a conclusion that the person lacked capacity for this reason on the basis of one assessment alone.

AND 

  • If you conclude that the person lacks capacity to make the decision, you must explain how the deficits that you have identified – and documented – relate to the functional tests in the MCA. You need to be able to explain how the deficit you have identified means (even with all practicable support) that the person cannot understand, retain, use and weigh relevant information, or communicate their decision.

Authors- Dr Emma Cameron (Highly Specialist Clinical Psychologist, National Hospital for Neurology and Neurosurgery) & James Codling (MCA/DoLS Training and Development Manager, Cambridgeshire County Council)

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Death of Aaron

Multi-agency learning:
death of Aaron, 19 year old with FASD

'Aaron a young man with FASD died, a presumption of capacity was applied'.

 

'No Mental Capacity Assessment by a Specialist was undertaken in relation to whether he was able to decide where to live and receive care and support, around contact with specific people who had presented a risk to him, and around his use of social media and internet'.  

'At the age of 18 Aaron was diagnosed with FASD, but further recommended tests were never undertaken due to a lack of understanding and pathway of where the referrals needed to go.

 

It was evident from the learning event that agencies had a limited knowledge of FASD.

 

The following recommendations were therefore made as part of the review.

 

The DSAB and DDSCP should consider providing training on FASD, ideally for agencies working in both adults and children’s services, and to have clarification regarding referral pathways for requested tests.

 

Training should focus on how best to work with children, young people and adults who have been diagnosed with FASD.'

'Adult Exploitation:

Individuals who are extremely vulnerable up to the age of 18 years do not suddenly become less vulnerable when they turn 18 years of age."

 

"The DSAB should consider the development of a risk assessment for young adults where there are concerns about additional vulnerabilities, including sexual exploitation and adults at risk of other forms of exploitation and abuse.

 

Risks should be balanced against Making Safeguarding Personal and documented and shared with agencies involved.

 

Risk assessment forms should be available for those over 18 years where there are concerns and additional vulnerabilities.'

'Mental Capacity Assessments In Aaron’s case, presumption of capacity was applied. No MCA assessments were undertaken in relation to whether he was able to decide where to live and receive care and support, around contact with specific people who had presented a risk to him, and around his use of social media and internet.

 

Therefore the following recommendation were made:

 

1. Mental Capacity Act assessments for specific decisions need to be understood, considered, documented and shared with those involved.

 

2. Where it is evidenced that there is capacity, and the VARM criteria are met, to promote the use of the VARM process. If in key decisions, capacity is not present, decisions about keeping the person safe needs discussing with the Social Worker, manager and key agencies involved, with a focus on a safety plan and a best interest decision would be required."

"With better transition planning and even an urgent planning meeting, young people like Aaron should in the future be placed in more suitable accommodation.

 

However, there is recognition that finding the right accommodation to meet complex needs of young people is difficult, especially when trying to avoid moving young people out of area.

 

Contingency planning and multi-agency planning meetings involving both adults and children’s services should be held to ensure the right accommodation is sought to meet the young person’s needs to avoid them having to move if placements break down.'

Summary of findings: 

"All agencies and professionals are encouraged to reflect on the findings and learning themes and discuss the implications for their service and future practice.


Practitioners who feel they are dealing with similar cases should escalate or discuss with their line manager or safeguarding lead, to ensure that they are supported. Front-line staff need time for safeguarding supervision or a suitable alternative meeting to allow reflection, as well as protected time with the children, young people and adults they work with.'

Safeguarding Board

Source: Learning Brief: Multi Agency Learning Review19A: Aaron
June 2020

 

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More on codes of practice and mandatory training....

Learning Disabilities and Autism are just 2 of the 328 co-occurring conditions of Fetal Alcohol Spectrum Disorder (FASD)

 

Important NEW Guidance

The Oliver McGowan code of practice on statutory learning disability and autism training

Published 19 June 2025

 

Policy change following the devastating death of Oliver McGowan, a young autistic teenager with a mild learning disability, who sadly died after having a severe reaction to medication which he and his family had asked for him not to receive.

"Oliver died because clinicians did not understand learning disability, autism and how this affects a person. They did not understand how to make reasonable adjustments for Oliver or read his hospital passport which would have told them exactly how to do this. Clinicians did not follow the relevant laws: the Human Rights Act 1998, the Autism Act 2009, the Equality Act 2010, the Mental Health Act 1983 and the Mental Capacity Act 2005.

 

They were 'misunderstanding' Oliver’s autism which resulted in diagnostic overshadowing. They were not familiar with STOMP (stopping over medication of people with a learning disability, autism or both with psychotropic medicines) or Ask Listen Do. These are all core ingredients that are at the heart of The Oliver McGowan Mandatory Training."

Oliver’s mother, Paula McGowan OBE

"We need to achieve to make our health service fit for the future, including the critical shifts from sickness to prevention and from hospitals to communities. Ensuring that health and care staff have the right knowledge and skills to provide compassionate, informed care for people with a learning disability and autistic people is an important part of these goals."

"Publication of a brand new code of practice as required by the Health and Care Act 2022 is a significant step towards improving the care and treatment of people with a learning disability and autistic people. The code provides the detail of how we expect registered health and care providers to meet the new requirement for training and lets people with a learning disability and autistic people and their families know what to expect from their service providers."

UK Government

 

The code emphasises the importance of person-centred care which is crucial to identify and support a person’s needs sooner, ultimately improving outcomes and tackling health inequalities. This underpins FASD Informed good practice & fundamentally ensures that practitioners are FASD Responsive. 

'Section 181 of the Health and Care Act 2022 (the 2022 Act) introduces a requirement into the Health and Social Care Act 2008 (the 2008 Act) and regulation 18 of The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 (the 2014 Regulations) that, from 1 July 2022, service providers registered with CQC must ensure their staff receive training on learning disability and autism appropriate to their role. It applies to all registered providers of all health and adult social care in England. We will refer to the Health and Care Act 2022 (the 2022 Act) throughout the rest of the code.

This requirement builds on the existing staffing requirements set out in regulation 18 of the 2014 Regulations which require registered providers to ensure staff receive such appropriate support, training, professional development, supervision and appraisal as is necessary to enable them to carry out the duties they are employed to perform. CQC’s website sets out further details on regulation 18.

Because NHS trusts (as an entity), primary medical and dental care, independent healthcare, independent sector ambulance providers and adult social care providers are all required to register with CQC as providers of health or social care, they are referred to in this document as ‘registered providers’.

The 2014 Regulations describe the health and adult social care activities that may lawfully only be carried out by providers that are registered with CQC and set out the registration requirements that these providers must meet to become and stay registered. The 2008 Act and the 2014 Regulations are law and must be complied with. CQC has enforcement powers that they may use if registered providers do not comply with the law. More information about enforcement can be found in section 4, ‘How to use the code to meet the training requirement’.

Section 21A of the 2008 Act, as inserted by the 2022 Act, places a duty on the Secretary of State for Health and Social Care to issue a code of practice about compliance with the requirement for staff of registered providers to receive training on learning disability and autism. CQC will take into account the code and how registered providers are meeting and complying with the requirements of regulation.

 

If a registered provider has not followed the relevant guidance contained in the code then they will be expected to give good reasons to CQC on why they have departed from it and be able to demonstrate that it meets the requirement in a different way.

The Oliver McGowan draft code of practice on statutory learning disability and autism training 2025

Hear of the heart-breaking story of when the system fails to protect the most vulnerable; Jeremy's daughter Lizzie, with Fetal Alcohol Spectrum Disorder, was taken from outside their home the day after her eighteenth birthday.

Assumptions made, risks not assessed, specialist capacity assessment not carried out.

 

A story told through a loving parents voice; Lizzie was isolated, coerced, and exploited.

 

It is a profoundly moving story of loss, where the impact of professionals making assumptions & not following the Mental Health code of practice led to the heart-breaking loss of a child, loved and looked after by her adoptive parents. 

 

The Podcast and Blog outlines the importance of following statutory Mental Capacity code of practice guidelines in referring mental capacity assessments to a specialist team who are clinically trained in FASD.

Find out more HERE

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