MK
Hospital
To
be frank, we are fed up with Milton Keynes children's diabetes services being a Cinderella
service. So much so that several families have moved over to University
College London Hospital (UCL) and another family have recently submitted a
formal complaint about a collection of failings to support their daughter with
her diabetes and coeliac disease. There
are not enough staff trained in children's diabetes care at Milton Keynes
Hospital and they are currently failing to meet NICE guidelines - especially
concerning provision of insulin pumps and training in carbohydrate counting. However, there have been some developments this year which are potential causes for optimism.
In
May 2008 we received a letter
from the Chairman of the Primary Care Trust, Dr Nicholas Hicks via MP, Dr Phyllis
Starkey promising two major changes .
-
An
Additional Paediatric Diabetes Specialist Nurse - this financial year
(2008/2009)
-
The
PCT requesting that the Hospital appoint a new consultant in 2008/2009
who will have the specialist skills to fully support pump therapy .
Click
here to see the letter
Since
that letter, the new consultant paediatrician Dr James Bursell who replaced the
retired Dr Latham is now in post. We have made contact with Dr Bursell who
specialises in diabetes and appears to have all the right aspirations for the
service. We hope to work closely with Dr Bursell to help him lead the
service into a standard that provides our children with a proper standard of
care that meets NICE guidelines and ensures their short and long-term health and
quality of life. Meanwhile
we are very frustrated that the extra nurse has yet to materialise and families
report that they often have to speak to an answer phone at a time of crises because
there is no one there to offer expert advice when they need it.
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What
is really worrying about all this is the long-term health risks for our
children. This graph shows risk factors for different HBA1c levels.
HBA1c - is an average blood test for three months which is completed at the
diabetes clinics.
1
is the risk factor for a non-diabetic person. This graph shows that if
your child has an HBA1c of 8 or more (very common in Milton Keynes), they are
three times more likely to suffer eye damage (retinopathy) than a non-diabetic
child. Some parents have told us that their child's HBA1c is over
10. This puts them at a risk of 4x for nerve damage (neuropahthy), 6x for
Kidney Damage (nephropathy) and 7x for eye damage (retinopathy).
Lets
prevent this from happening. How? - Here's how: our Seven Point Plan.
24/7
Helpline.
Emergency
diabetic complications do not time themselves to fit in with the working
hours of the current part time nurses who are often not available due to
sickness, holidays, training days and home/school visits. Diabetic
emergencies often happen at night or in the weekend. So a 24/7
helpline is essential - particularly for families of newly diagnosed
children.
This
is not an unrealistic demand. It is
specified in the National Service Framework for Diabetes. We believe
it can be met by a combination the following measures:
 |
Two
full-time paediatric diabetes nurses. .
The Royal College of Nursing (RCN)
recommends one specialist nurse for every 70
children. Milton Keynes has around 140 children with diabetes. We
are still looking forward to the appointment of the extra nurse promised by
the PCT. | |
Access
to a specialist paediatric diabetes nurse service provided through a 24/7
helpline
number. This could be provided by NHS Direct employing
specialists or by a regional team. | |
Better
management of voicemails and on-call systems.
The current system is very unreliable where parents call one of the part
time paediatric diabetes nurses and the call is returned several days
later or not at all. Often no clue is given as to when the call
will be returned. | |
Robust
systems for out of hours emergencies.
We need clear systems that
all departments of the hospital understand. These systems need to be made clear
to parents of children with diabetes. |
|
A
Paediatric Diabetologist.
We now have one paediatrician who specialises in diabetes
which is a great step forward. However the other paediatric consultant is not a
specialist. This means that half the children are receiving a more
expert standard of care then the other half. We believe that given the
complexities of diabetes and the high stakes of getting it wrong, all the
children should be receiving the expertise of a diabetes specialist.
Regular
educational support sessions.
This is where issues such as
carbohydrate counting, psychology and alternative insulin regimes could be discussed in a less
formal setting than the family clinic sessions. We are now working in
partnership with the hospital to provide such events. Recently, we ran
a cheese and wine evening featuring presentations on carbohydrate
counting. Carbohydrate counting is an essential skill for people with
diabetes - and we hope that the hospital team will continue to support and
mentor parents to carbohydrate count and to work out carbs to insulin
ratios. Additional dietician hours may
be needed to fully provide this service.
-
Full
access to current technology
All
children with diabetes should be given a choice of insulin pump therapy or multiple
daily injections combined with carbohydrate counting and
continuous glucose monitoring. Many families have at last moved
onto multiple daily injections. We want the hospital to be more proactive
with new techniques rather than just responding reactively to handful of
parents who have requested referrals for better therapies. This will
help to improve our children's quality of life and help to prevent long-term
health complications. Hopefully, based on the above PCT letter, this
goal will be achieved.
-
Proactive
Psychology Support
This
should help families to support their children to persevere with this complex condition.
We have been told that this can be arranged through referrals however some
families have found this to be unavailable. It would be far
better if psychologists were able to be involved with the team at each
clinic so they steer families away from trouble before it gets to a crisis
stage.
-
MK
Hospital to take the lead with schools.
Most schools in the
area are helpful, some have been fantastic in the way they support our
children. However some have been obstructive. The part-time
diabetes nurse is good at giving presentations to teachers and
children. We want to take this further. We want the hospital to
set minimum-level individual care plans for children with diabetes which
must be tailored and updated in regular consultation with parents.
-
Better
information for parents of newly diagnosed children.
This should
include giving them information about our group. Being newly diagnosed
is frightening and involves all sorts of other emotions - for child
and parent. So it is vital to meet other families who truly understand what
you are going through. We also believe that parents of newly diagnosed
children should be warned that night-time hypos can involve violent seizures
('fits').
Such seizures have happened to at least half the children in our group.
Parents should be emotionally and physically prepared for such an event.
They should also be given insulin regimes and blood testing times that will
help to minimise the chances of night time hypos.
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Schools
Diabetes
support is as much a postcode lottery in schools as it is in
hospitals.
In
some schools, teaching staff have refused to allow their first aiders to
provide diabetes support to children. Other schools are excellent.
For example, Bedfordshire schools in Woburn Sands; Swallowfield Lower School
and Fulbrook Middle School provide excellent care with teams of first aiders
and teachers learning how to carbohydrate count and support a child on a
pump. However,
we understand that Milton Keynes Policy requires that only visiting nurses can
do this - not school staff. This un-caring jobs-worth stance
is not in the spirit of Health and Safety
at Work Act or Disability Discrimination Act.
Lately,
there has been much campaigning for consistent care in schools.
There is a national initiative between the Juvenile Diabetes Research
Foundation, INPUT (The pro-insulin pump group), Diabetes UK and the Children
with Diabetes Advocacy group to produce standard guidance for schools.
So, hopefully this situation will be solved on a national basis soon.
Aran Gardner, William Simmons and several
other children and young people from the Milton Keynes region travelled to a
Diabetes lobby of Parliament on 18th November 2008 to ask MPs to improve
support for pupils with diabetes in schools in England. Diabetes UK invited MPs from the region to
attend the lobby and hear about the inequalities in support for children
with diabetes during school hours.
The following information has kindly been
provided by Aran's Mum, Angie
Although Aran is lucky enough to attend
the Radcliffe School in Wolverton where the permanent staff give him a lot
of support, temporary staff however, (of which there are far too many) are
often obstructive and unhelpful. Help is desperately needed to educate all
teachers and support staff that when a child or young person says he has
a problem NOW, he means immediately and not at the end of the lesson.
Diabetes is a serious condition that, if not
managed effectively, can lead to long-term complications such as heart
disease, stroke, kidney failure and amputation. Short-term
complications of the condition include hypoglycaemic episodes, known as
"hypos". These can lead to unconsciousness and hospitalisation if
left untreated, even for a very short time. However, effective diabetes
management from the time of diagnosis can reduce the risk of these
complications. This is why giving children and their families the right
support to control their condition from an early age is vital to protect
their short and long-term health.
It must be understood, however, that due to the
unpredictable nature of diabetes, even with the best care available
"hypos and "hypers" cannot always be avoided and are not the
fault of either the child or their carers.
Since being diagnosed with Type 1 diabetes in 2004
when he was only 8, Aran has had excellent help and support from his
schools and Milton Keynes General hospital. In spite of this, he has still
been admitted for urgent treatment, or had to have an ambulance called, 11
times. On at least three of these occasions swifter reactions from
ill-informed adults could have prevented the severity of the episode.
Julie Orrey, a regional manager for Diabetes UK
said
"For every child with diabetes who doesn't
receive appropriate support at school, a whole family suffers. We
already know that the health and well-being of 83 % of children with
diabetes is in jeopardy because they are not achieving recommended blood
glucose levels and we must do everything we can to help them. Schools
have a vital role to play in changing this frightening statistic - and with
an estimated 2,000 children being diagnosed with Type 1 diabetes every year
in the UK, action must be taken now.
The Government needs to ensure that pressure
comes from the top down to implement existing legislation so that local
authorities, primary care trusts and schools can work together to have
effective policies in place to support children with diabetes - and actually
adhere to them. Inspections and monitoring will play a vital role in
this. It is appalling that some children with diabetes are not getting
the support they need to live a full school life."
To coincide with World Diabetes Day, on Friday
14th November Diabetes UK released Making all Children Matter ,
a report that looks at the current situation for children with diabetes in
schools in England and what needs to be done to ensure they get the same opportunities
as every other child. A copy of the report can be
downloaded at www.diabetes.org.uk/makingallchildrenmatter.
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Type
1 is not the same condition as Type 2!
Moving
on to another campaigning issue, there is something else that really 'gets our
goat', 'drives us up the wall' etc etc. It is the media lumping type 1 and
type 2 diabetes together as if it is the same condition. Even worse they
imply that all diabetes is caused by childhood obesity. Rubbish!
The
causes of type 1 diabetes are yet to be established. For some
reason the immune system in the body destroys it's own insulin producing cells
in the pancreas. We all need insulin to help get the sugar we eat into our
cells to give us energy. So, people with type-1 diabetes have to
take insulin injections every day to survive.
There
are about a 100 children in Milton Keynes with diabetes. As far as we
know, they all have type 1 diabetes. Now, you only have to look at
the photo on the home page to see that all the children in the group are healthy
- except when suffering diabetes complications. You will also see that
they are not obese!
Type
2 diabetes is also called 'Adult Onset diabetes' because onset usually
happens after the age of 35. People with type 2 diabetes still make their
own insulin - but the insulin is not effective at getting the blood sugar into
the cells. Most can manage their condition by taking tablets - although
they often progress to insulin injections if their condition worsens. Type 2 is
often caused by lifestyle. Apparently there are reports in America of
overweight teenagers developing the condition.
This
does not mean that all people with type 2 have the condition because of their
lifestyle. Some adults with type 2 are otherwise healthy - although there
are theories that many fit type 2's have been misdiagnosed and actually have a
rare form of diabetes. Our point
is not to say that people with type 1 are better than people with type 2.
We just don't want our children being tarred with the same brush as many people
with type 2 who could have prevented their condition with a healthier life
style. We also don't like it when the media report of millions of people
walking around with diabetes that are unaware they have the
condition. This is only true for type 2's. If type 1's don't
get diagnosed they would be in a coma.
We
regularly appear on local radio (Three counties and Horizon) to get this point
across and we also write complaints to national newspapers and the television
when they over simplify. This is an ongoing battle. The childhood
obesity debate is very topical and we agree that children need a healthy diet -
diabetic or not. The problem seems that whenever childhood obesity is
mentioned, journalist love to spout; "there are alarming levels of
childhood obesity which is linked to diabetes and heart disease".
It's become a bit of a cliché and helps dramatise their point but it is
completely out of context.
We
even challenge our parent organization on this issue. We were very cross with an article in 'Balance' magazine which jumped
to conclusions that type-1 diabetes could be caused by obesity. So, we
sent this complaint letter.
An
abridged version of the letter was published in the May 05 issue of balance.
We are grateful the letter was published. We were a little disappointed
that the editor's reply did not address the points we raised. Still, we've
made our point and hope that the editorial team will think twice before writing
similar articles in the future!
One of our members, Clare Scott was infuriated when she heard a news
report on Horizon radio implying that most childhood diabetes is caused by
over-eating and bad diet. So, she rang up the radio to complain. She
was a little taken aback when they asked to visit her house to interview
her. This was a new experience for Clare who had never been on radio
before but she did a great job at explaining that type 1 diabetes is both hard
to live with and it's causes have nothing to do with diet!
Nigel Hammond dissuaded Horizon radio from linking diabetes with a government
study on diabetes in children. Also both Nigel Hammond and Angie Gardner
were interviewed on three counties radio to explain the differences of type 1
and type 2.
If
you hear any media reports or read any of the diet books that associate obesity
with diabetes in children, please set them straight!
.
