Based on the evidence, given throughout the investigation, the scrutiny panel concluded that:
Over the last 18 months the Council had concentrated on promoting the prevention of FASD and the panel had been impressed by the excellent work undertaken in this area. It was clear however from the evidence gathered that insufficient data was currently available on the follow up process for children potentially at risk of FASD following birth. There was also a need for a shift forward in service provision. When services were aware that the cause of the childs health issues were due to pre-natal alcohol exposure an increased focus on dealing with these difficulties in the early years would be undertaken. Early intervention in areas such as Speech and Language, Occupational Therapy and Educational Psychology were beneficial in obtaining / ruling out a FASD diagnosis and the earlier the intervention the better the outcome for the child.
When there was evidence to indicate that the prevalence rate for FAS locally was 20 births per year. For which there appeared to be a professional consensus all services should be expecting those numbers coming through the system. Diagnosis remained a stumbling block locally and were falling behind other authorities. Representatives from numerous organisations expressed the view that a local study of Looked After Children with probable FASD in Middlesbrough would be worthwhile.
Families reported that in terms of appropriate support it was evident children and families were experiencing a number of issues and it was not easy for them to access support. South Tees families reported a shocking state of affairs from their perspective and felt let down that there was a lack of services.
Currently there were three pathways of care commissioned and FASD was not overseen by any. In addition:
Elsewhere across the North East region the condition was being diagnosed.
Autism had to prove its existence and there must be benefits for children and families in obtaining a diagnosis.
There needed to be a way of supporting parents to navigate the system with some form of advocacy in place.
Preventing FASD before it develops would be the most effective approach.
In light of the findings in Gateshead and Peterborough the Council owed it to children in Middlesbrough, particularly those in the care system, to undertake a piece of work on FASD in partnership with the LAC Paediatrician. There was a potential that children were not receiving the specialist support they could be without having a formal diagnosis. The issue of labelling children with FASD had been carefully considered during the review and it was the panels view that to ensure children were receiving the right support a local study needed to be undertaken.
FASD was an incurable condition and the public should be made fully aware that it was preventable. The number of people being diagnosed with FASD was not representative of the harm caused for families and local communities affected. The message of not drinking any alcohol during pregnancy was a clear one. Given the serious nature of the condition the panel was of the view that the wording featured in the prevention campaign was not strong enough nor was the UK Guidance on drinking in pregnancy issued by the UK Chief Medical Advisor. The point was made that 50 per cent of all pregnancies are unplanned and this was a whole population issue.
FASD was not routinely included as part of any of the formal training undertaken by Social Workers or Teachers. GPs, Social Workers and Teachers are coming into contact with children regularly and the referral system needed to be there to signpost parents to the right person. The Department of Healths guidance on training was professionals were responsible for their own professional development. However, in Peterborough training provided by a Community Paediatrician with a specialist interest in FASD was available as part of the Local Children Safeguarding Boards Training Programme. At present this was not the case in Middlesbrough.
The point was made that a full medical assessment was undertaken when a child was adopted. Information on mothers medical records remains with the mothers GP practice and it can be difficult for another GP to access that data. At the point of adoption the child becomes a new person and the panel acknowledges that there were some areas of national policy that the panel cannot effect. In an effort to provide this information to adopters and ensure it was not lost the panel was keen to ensure that the recording of such information is included in the Childs Permanence Report.
The panel welcomed the fact that more support was now available to children and their adoptive parents, long terms foster carers on the issue of parental alcohol use. There was also more information available to prospective adopters.
1. The Health Scrutiny Panel recommends to the Executive:
a) That the Director of Public Health brings together an expert group of professionals including appropriate representation from South Tees CCG, Public Health, South Tees NHS Hospitals Foundation Trust, LAC, CAMHS, Community / LAC Paediatricians, Educational Psychologists and the FASD Network to take this work forward in 2017/18.
b) That a specific piece of research be commissioned by the Council and the CCG in Middlesbrough / Tees Valley on FASD. That collective effort is made to secure the appropriate funding requirements in order that a local research project on FASD can be undertaken. People with expertise are invited to secure external funding to invest in a study, which includes bloods being taken around a mothers 'booking in' appointment so prevalence rates in Middlesbrough can be established.
c) There needs to be a pathway of care for all FASD spectrum disorders and this needs to be included in the Joint Strategic Needs Assessment. This should identify the commissioning responsibilities. For example that a service be developed where a child can have assessments undertaken by appropriate professionals which then make collective recommendations on the support that can be provided to the child. Given it is estimated that there are between 400 - 1,300 children in Middlesbrough with FASD.
d) That the above pathway of care needs to ensure that appropriate support for families is also developed.
e) Clinical capacity in this field needs to be further developed. This is not a childhood condition and service provision needs to reflect the support required throughout an individuals lifespan. Adult social care need to review its response to those affected by FASD and plan for future service provision.
f) That the Council and its partners need to raise awareness in schools to ensure young people are fully aware of the dangers that drinking during pregnancy can have on an unborn child. The campaign material should be clear, precise and written in the strongest possible language.
g) That appropriate training is available to relevant professionals on FASD in Middlesbrough. Including VCS organisations.
h) That the Council uses its powers as a licensing authority to further develop its Licensing Policy highlighting the damage that alcohol can cause to an unborn child. A condition for publicity material to be displayed at the point of sale be introduced. This influence should be used with other outlets including pubs, restaurants etc.
i) That the Mayor write on behalf of the Council to the National Institute of Clinical Excellence (NICE) for recognition, referral, diagnostic assessment and post diagnosis guidance on FASD to be issued for clinicians. The guidance would provide an evidence based clinical protocol for diagnosis.
j) That the Council continue to review and improve through childrens safeguarding services the support in place to adopters, foster carers and connected persons carers. As well as all parents and children in need.
The panel had heard anecdotally that it was more difficult to obtain an Educational Healthcare Assessment in 2016/17 than it had been when the assessments were undertaken separately. However, the legal threshold for requesting an assessment in 2014 had been reduced which meant technically it should be easier. In light of this information the panel requested that the SEN 0-25 Manager be contacted for further information on this issue.
AGREED as follows:-
1. That Cleveland Local Medical Committee be contacted to ascertain a response in respect of future GP recruitment in Middlesbrough.