Integrated Care Systems, Health Boards and NHS Trusts

Also in this section:

Decisions are made locally about what hospital and community NHS services are needed

Government policy says that local areas are responsible for providing FASD services.

NATIONAL FASD TIME IS NOW REPORT

National FASD’s report The Time is Now: The National Perspective on Ramping Up FASD Prevention, Diagnosis and Support Services has information on how to think about increasing service provision based on best practice. More information about that report is available here.

EARLIER NATIONAL FASD REPORT SHOWED CCGs WERE failing to provide services for FASD

National FASD’s report A Crisis of Commissioning: CCGs Are Failing Government Policy on FASD (2019) was based on Freedom of Information research. This report had a big impact. Its finding showed not one CCG said they have a policy on commissioning services for Foetal Alcohol Spectrum Disorders.

80%

Nearly 80% said they do not provide diagnosis for children with FASD

92%

92% said they do not provide diagnosis for adults.

19%

Only 19% of Trusts and Health Boards said that they provide post-diagnostic services for those with FASD.

The report was based on Freedom of Information Act requests that were sent to all NHS Trusts, CCGs, Health Boards and other bodies in England, Scotland and Wales and Northern Ireland – more than 450 bodies in total. Replies were received from 166 CCGs and 167 Trusts.

The report highlights best practices in some areas, such as Scotland, the North East, Blackpool, and Manchester. Yet it also states, “In no case that NOFAS-UK is aware of is any CCG providing diagnostic services for the full number of people likely to have an FASD in their area. Even where best practices exist, the structures are not yet adequate to meet the need.”

The report was presented at a meeting in the House of Commons of the All Party Parliamentary Group on FASD, chaired by Bill Esterson MP, on 9 May 2019.

The lack of proper commissioning acts as a barrier to the development of services required to adequately address the needs of individuals affected by PAE [prenatal alcohol exposure].”

Freedom of information responses showed CCGs are not providing enough FASD services

NO: 100% (166)

Does the CCG have a policy for commissioning services for FASD?

NO: 91.57% (152)
YES: 8.43% (14)

Does the CCG provide services for diagnosing FASD in adults?

NO: 86.14% (143)
YES: 13.86% (23)

Is there a lead person in the CCG on FASD?

NO: 78.31% (130)
YES: 21.69% (36)

Does the CCG provide services for diagnosing FASD in children?

NO: 89.76% (149)
YES: 10.24% (17)

Is the CCG involving individuals with FASD or their caregivers in planning or developing proposals?

NO: 81.33% (135)
YES: 18.67% (31)

Is the NHS Trusts/Health Board providing post-diagnostic care for FASD?

Policy reports

Time is Now

Based on 9 roundtables with more than 60 practitioners, commissioners, experts, people with lived experience and leaders from the Third Sector, this report has practical suggestions on how to ramp up FASD services based on best practice and in line with the NICE Quality Standard.

Easy Read Summary of the Time is Now Report

This explains the main points of the Time is Now report and why it matters.

CCG Report

Based on Freedom of Information requests to all Clinical Commissioning Groups and NHS Trusts and Health Boards, this report highlights the mismatch between government policy and actual practice. The vast majority of CCGs are not commissioning services for FASD prevention, diagnosis or post-diagnostic care for those with FASD.

Easy Read Summary of the CCG Report

This explains the main points of the CCG report and why it matters.

British Medical Journal Article

“A quality standard on fetal alcohol disorders is set to be developed by the National Institute for Health and Care Excellence (NICE). The announcement came as a charity’s report showed that clinical commissioning groups are failing to commission services for people with neurodevelopmental disorders arising from exposure to alcohol in the womb.”

“Any policy maker who cares about the most vulnerable in our society should request answers to this unacceptable situation. This is a disability rights issue. Imagine suspecting you or your loved one has organic brain damage and being unable to get a proper diagnosis or support. It’s cruel.”

"Paediatricians are usually the first point of contact for children with neurodevelopmental difficulties. However large number of Paediatricians seeing children with neurodevelopmental disorders do not have the appropriate skills, training and required resources needed to recognize or appropriately diagnose children with FASD. This results in many children being given inappropriate diagnostic labels for their difficulties. The lack of appropriate diagnosis results in affected children not being able to access the right resources which then results in longer term impact on the children’s learning, emotional and mental health. Early diagnosis results in better outcomes for children with FASD hence there is an urgent need for commissioned services.”

“Evidence is there about what works. If health services do not take the lead through commissioning diagnosis and needed support, then to be honest how will others who interact with affected individuals understand the situation and their needs? We will continue to waste millions of pounds on possibly ineffective interventions and the potential of thousands of individuals will be needlessly limited, with great impact on our society.”

“Individuals and families are struggling enough as it is without being met with the lack of awareness of professionals in this matter. FASD is more common than autism and commissioning of appropriate services needs to reflect this.”

“I have been trying to get a diagnosis for five years. There should be no barrier or age restriction. Regardless of age I should be able to get assessed. I need a diagnosis so my employer will provide the support I need.”

“Despite increasing evidence that this is a common disorder, it is not often the focus or consideration of many health professionals and CCGs. For a condition that has lifelong issues for the individual and society, getting it wrong simply exacerbates the well-recognised associated disabilities. The NHS has, with the right support, the ability to change this quickly as the basic structures are in place. Without clear direction and consistent approaches, the postcode lottery highlighted in this report is likely to continue.”

What You Can Do

Write to your local health board – suggestions on how to do that are here and here. (Note these are from September 2022 awareness month actions, so not all the information is relevant, we will update these soon.) Ask them to meet with you and other stakeholders about FASD. If you are in England or Wales, ask what they are doing to implement the NICE Quality Standard on FASD.
Contact your local media and explain the ‘local angle’. “Local families unable to access services for brain-based conditions’. There is some background info here that might be of use.
Posters for GP Surgeries. National FASD has posters that can be sent to you for GP surgeries in your town. You can take them to the GP and ask them to put them up. They can either have a local number on them, if you have a local support group, or they can have the National FASD Support Line number.

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