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1.
Medical needs in schools:
Children in Wales do not have the same rights in law as children in
England regarding discrimination against them if they have
diabetes. The Families Act in England specifically states
that children and young people with medical needs must receive
support in schools.
The Children and Young People’s Wales Diabetes Network is in
a unique position in Wales as our members work with all 1,500
children and young people with diabetes. The majority of
children with diabetes (96 per cent) have Type 1 Diabetes, which is
not linked to lifestyle factors, and requires multiple daily
treatments with insulin, or continuous treatment through an
‘insulin pump’.
The experience of NHS Wales staff supporting children with diabetes
shows huge variation in the support offered to children with
diabetes in school. Our members regularly report instances of
schools refusing to help with the administration of insulin.
Because of their medical needs, many children experience
exclusion from activities in school, and also from school
trips.
We believe there is a need for a change in legislation in Wales to
introduce a statutory duty of care for children with medical needs
in schools. In England, the Children and Families Act 2014
contains a statutory duty to support pupils with medical conditions
(section 100), meaning that in practice schools must
make additional arrangements for supporting pupils at schools with
medical conditions. This legislation does not apply to
schools in Wales, meaning the rights of children and young people
with medical needs in Wales during the school day are not protected
in law to the same level as children in England.
The benefits of protecting the
rights of children in Wales through introducing a statutory duty
for schools to support children with medical needs are as
follows:
§ Improving attendance, attainment and overall
educational experiences for children in Wales, which will also
reduce the academic disadvantage in comparison to their peers in
England who are protected at school.
§ Children with diabetes will be safer and
healthier.
§ Children and young people with Type 1 diabetes
will be able to participate in all aspects of school
life
There is an opportunity to include this statutory duty of care
within the newly proposed Additional Learning Needs (ALN)
Framework. Currently, the Welsh Government’s proposed
ALN Framework documentation states that children with medical needs
will not be covered by the ALN Bill (p.30, draft ALN Code of
Practice). As a Network we request the Committee to examine
the Additional Learning Needs Framework with the intent of
including all medical needs, and particularly diabetes.
As a network we were asked to
produce evidence for Welsh Government about the need for a
statutory duty of care in schools. We have co-authored a
report with Diabetes UK Cymru, called “An Excellent Chance:
Type 1 diabetes in schools in Wales”, which we have submitted
alongside this consultation response.
We ask the Committee to consider the
current situation and ask whether the legislative opportunity
provided by the Additional Learning Needs bill could be used to
protect the rights and support children and young people living
with Type 1 diabetes in Wales.
2.
Early diagnosis of Type 1 diabetes
in primary care:
Each
year between 100-150 children in Wales are diagnosed with Type 1
Diabetes. Around 15 per cent of children are diagnosed after
they develop life-threatening Diabetic Ketoacidosis (DKA). This
rises to 24 per cent for children under the age of five. To
avoid DKA, it is crucial that Type 1 diabetes is identified early
and treatment is administered as quickly as possible
Early
identification and symptom recognition are key to the prompt
diagnosis of Type 1 diabetes. As a Network we are aware that
many new diagnoses are delayed due to the proper testing procedures
not being followed when diabetes is suspected. Children should be
tested immediately, not referred for blood tests the following day
or at a later date.
As a Network we
are working to engage healthcare professionals in primary care to
alert them to the life-threatening implications of delays in
diagnosis. We believe it should be a priority for NSH primary
care services. We would ask the committee to consider
recommending all NHS Wales organisations investigate cases where
children and young people are not tested and referred according to
the established pathways, particularly if this has resulted in DKA.
We believe that failure to comply with the testing policy
should be investigated as a serious clinical incident. We
would welcome the support of the committee in raising this issue
with health boards and primary care leads across Wales.
3.
‘Transition’
is the term used to describe the period of life when a child moves
into adulthood. Within a healthcare context, children with
chronic conditions, such as diabetes, stop receiving care from
paediatric teams around the age of 16-17 and begin being cared for
by adult services.
There are a number
of issues across Wales in ‘Transition’ services and we
would ask the committee to consider examining this whole area as a
matter of concern. The impact of poor transition is seen in
poorer health outcomes and shorter life expectancy as adults.
In some ways, ‘transition’ represents the
‘end of childhood’, and this time period tends to be
neglected in comparison to the early years of childhood. We
would argue that good work done in the early years is often undone
by poor transition services, reducing the impact of the investment
made in the lives of young children.
There is a
national co-ordinator for Transitional Diabetes Care but this is a
short fixed-term post. We would ask the committee to
investigate the value of a long-term commitment by NHS Wales to
improving transition services in diabetes and other chronic
conditions.
4.
There
is huge variation between health boards in Wales regarding access
to technology and medical devices that improve diabetes care and
the quality of life for children and young people with diabetes and
their families. Devices such as insulin pumps and continuous
glucose monitors are distributed in a haphazard way across Wales,
with different criteria used in health boards. NICE guidance
and nationally agreed criteria are often ignored.
We
would ask the committee to consider investigating this geographical
inequality and support efforts to produce an all-Wales approach to
ensure fair and equitable distribution of technological treatment
options across Wales. Where children and young people meet
the NICE criteria, they should be offered the technology options
that are recommended. Locally produced policies and
management decisions should not be allowed to prevent people from
receiving the treatments recommended by NICE.
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