Today MPs take a step towards offering better services and support to children and adults with FASD. Bill Esterson MP, with the support of the FASD Trust, is launching the All-Party Parliamentary Group on FASD.
An APPG brings backbench MPs together across party divides to work for an issue about which its members all care deeply. It can put pressure on Ministers and Departments for policy change, and it can help raise issues in the House of Commons. Only a few months on from the first ever Commons debate on FASD last Autumn, this is very welcome.
Coming as it does just after the election of Dr Sarah Wollaston MP as Chair of the Select Committee on Health, someone who knows and cares about the multiple issues surrounding FASD, there is an opportunity to take some good steps forward in provision of services, support for families and prevention of FASD.
And in truth there is a lot for the new APPG to do. The community of children and adults suffering from FASD badly needs support. Despite being an entirely preventable condition caused by mothers drinking during pregnancy (often at a time when they are still unaware they are pregnant), and the UK having a widely known and problematic heavy drinking culture, there is little recognition of FASD, indeed few people have even heard the term.
It is estimated by experts that between 3% and 5% of the population is in some way affected by FASD, and recent medical research highlighted in an ITV Exposure documentary in early March 2015 shows that alcohol has more profound and more serious effects for a baby in utero than heroin.
Despite this, awareness of the existence of FASD/FAS is very low in the UK, and specialised provision for those diagnosed with the condition essentially non-existent in the NHS, in education and in social services. This is the challenge facing the APPG as they begin work.
There is a long agenda of urgent issues that the APPG has to address:
- Improved, Above All Completely Clear, Guidance on Not Consuming Alcohol During Pregnancy
The Chief Medical Officer is currently reviewing all alcohol guidelines across the UK, and this would be a place for improved FASD information to be included, and for the warning that the only way to avoid FASD is not to drink alcohol while trying to become pregnant or while pregnant, to become the standard advice to young women. A clear warning of this kind, standard in almost all other developed countries is essential for the future. This clear warning needs to be on all alcoholic drinks, and these health warnings needs to be given to children in schools and by GPs and midwives to women who are or could become pregnant.
- Urgent Need for Funding for Specialist Clinics
One particularly important point, one which all MPs who participated in the debate last year understand very well, concerns NHS provision for the diagnosis of FASD. At present, there is only one specialist clinic in the country, run by Dr Raja Mukherjee, it is part of NHS Surrey and is funded only on an ad-hoc basis. Dr Mukherjee’s clinic needs to be commissioned nationally to ensure access to it, to ensure it is available for all those who need it, and to ensure the clinic’s long term future. We also need a series of regional clinics that can support a multi-disciplinary approach to health, social care, education, and family support. Mandatory FASD education for midwives, GPs and paediatricians to enable them to properly give warnings to pregnant women, or those of an age where they might become pregnant about alcohol and FASD; and also to allow them to support those with FASD and their families. All of this must be properly referenced in the government’s alcohol strategy. Families have a further identified a desperate need for education and training for CAMHS staff to allow better provision for those with FASD, which is at best patchy at present. Another important step would be a study of the prevalence of FASD across the UK to allow an understanding of the full implications of FASD for the UK.
- Schools and Teachers Need Increased Training
With wider NHS diagnosis and recognition of FASD will come a need for increase educational support. This support needs to include an awareness of FASD and its effects amongst teachers and support staff. Many FASD children are able to progress in mainstream schools, but only with appropriate support. At the moment schools and LEAs have to seek out information from the small, under-resourced charities that work on FASD or from the families of affected children, and they need support from the government for training for teachers and support assistants in effective methods and techniques for teaching children with FASD. For prevention of FASD, PSHE education for boys and girls should routinely include information about FASD and the consequences of drinking while pregnant or trying to conceive.
- Social Care Needs for Families Living with FASD
These are similar to the needs of families living with many other conditions, but FASD is so poorly recognised that provision is extremely hit and miss. From our experience, the needs include education and training for social workers, mental health workers, Police and others who will interact with FASD sufferers; education and training for clinical and educational psychologists; a recognition of FASD as a condition to provide easier access to existing support such as DLA, respite care, family support workers and others, and finally better information for FASD families to allow them to access services.
This is a long list of issues that the government in Westminster, and in the devolved regions, needs to deal with. As a family we’re watching the launch of the APPG keenly, and look forward to helping them reach out to other MPs and to the government, as well as working with the Select Committee on Health to improve public efforts to prevent FASD, and to support those with the condition. It’s good to think that there’s a group of MPs who are willing to fight our corner.