People standing on steps in Parliament

CCGs and NHS Trusts

Clinical Commissioning Groups decide what hospital and community NHS services are needed and they are responsible for providing them. 

Government policy says that CCGs are responsible for providing FASD services.

CCGs are 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. 

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

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 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.”

What You Can Do

  1. CCGs exist in England. If you live in England, write to your MP (writetothem.com and pop your postcode in) and ask them to contact the local CCG and ask what specific FASD services they provide in your area. To find the response (if any) from your local CCG, go to www.whatdotheyknow.com and search for the name of your CCG and ‘FASD’ then it should pop up. The same search will work for NHS Trusts. If you have any trouble doing this, please let us know and we will try to help.
  2. Ask your MP to join the APPG on FASD chaired by Bill Esterson MP. They can do so by emailing info@nofas-uk.org. (National FASD now serves as the APPG secretariat.)
  3. Contact your CCG and ask them to meet with you and other stakeholders about FASD. Ask what they are doing to get ready for the NICE Quality Standard on FASD. Click here for more information about CCGs and to find your CCG. (If you want help, contact National FASD and we can support your preparation for the meeting).
  4. Contact your local media and explain the ‘local angle’. “Local families unable to access services for brain-based conditions’.
  5. Posters for GP Surgeries

 

National FASD has two 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. Email us to get posters sent to you.

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