Sorry

1
Special needs require specialist treatment and
special care regularly
Individuals, who by their nature don't want to
access services for dental treatment, need support
It affects their behaviour and epilepsy
My son, now an adult, has epilepsy and a lot of
problems. His epilepsy is unstable. He has
epileptic fits when hes in pain. He needs more
individual treatment. He wont lie down, he
doesnt like touching, its very difficult for the
dentist. Dental treatment is not available at
ordinary dentists. He had problems when he was
younger. You expect in hospital to have back up
for a persons needs like epilepsy. The admin
staff should be aware straight away. Theyve got
protocols in place now. Theyve got equipment
available if things go wrong, and comfort.
Theres a Learning Disability group at the
hospital, and they have trained carers. It needs
the hospital knowing and having things in place
for a person. mother
Sorry
No mornings
No drink
No food
The difference in his epilepsy has been
staggering parent
Theres no emergency service. They cant deal
with him. We wouldnt have to go through what
they go through.I feel strongly, its
discrimination. Its like a third world
country.We could sue them. Some stories, Ive
heard, you wouldnt believe it. mother
No emergencies
He suddenly developed really bad behaviour, he
was miserable, for quite a while, for 18 months
or more. We hadnt realised he doesnt like you
going in his mouth anyway parent
They were marvellous, but he had to wait the
best part of a day at the hospital. He went
without food for a long time, which was difficult
because of his condition, but we got through it.
mother
Shes epileptic and brain damaged, she has a
child age of 4-5, she can be very difficult to
handle father
it creates behaviour as clients cannot
comprehend why they cannot have anything to eat
or drink I have through our dental surgery set up
a protocol to access dental surgery for one
client who refuses to enter the hospital setting
demonstrating severe behavioural issues. Sedation
at home, hospital paramedic support and transport
by ambulance eliminating all the issues, but this
took 2 years to set up Learning Disabilities
Practitioner
It affects their behaviour and epilepsy. They
stop attending activities. It takes 3 months for
their behaviour patterns to go back to what they
were before. Refusal of oral examination is the
whole issue. It has to be the dentist himself who
signs to say its in the patients best interests
to have a general anaesthetic. Its a rigmarole.
They have to be referred. They need to cut out
all the middle men so they can go straight to the
hospital. Manager of home for four clients with
profound learning disabilities
2
Treatment available . . . . .. or still waiting?
Urgent . . . . but still had to wait 3 months
. . .
The clinics only once a month at the hospital,
if just miss your slot, have to wait. I had to
cancel the last dental check up because he was
not well. Its 12 months since he had a check. If
theyre in pain, they need to be seen
promptly. Last time he needed dentistry there was
a 18 month waiting list. I bumped into another
mother a month or so ago, and she told me the
same. mother
I know of someone with an abscess had to wait
14 months for an appointment. Unfortunately the
patient died before the appointment came
through. support worker
. . . . They found whole side of his mouth was an
absolute mess.He had a cracked tooth, needed 5
fillings and one extraction.He must have been
suffering for months mother
post has been vacant for about 15 months,
therefore backlogs have arisen which we can now
tackle. This is not an uncommon situation Senior
Dental Officer, Special Care Dentistry
A lot cant or wont open their mouth
frequent comment 2001 2002 2003 2004 2005

Quality is reasonable, quantity is not. It is a
bought in service which is under funded by the
PCT father
Manager in a secure mental health
service Emergency treatment is very difficult
- can often take several weeks even when treated
as an "emergency. Check ups and general
treatment are not available to our 102 service
users.
I suppose after 5 yearshe really ought to be
looked at under anaesthetic . . . dental
officer quoted by parent
3
Open access?
We had a bad experience two and a half years
ago, when my daughter quite clearly needed
fillings as she was in so much pain. I had to
take her for 2 check ups to get it confirmed and
then told she would have to wait probably 6
months. I went mad to put it mildly and it was
done within 3 weeks. parent
You have to press the service as they are under
pressure, unable to meet current demand for
treatment sessions. Where needs are not severe
learning disability, parents are going out of
area to meet the needs of children father
Ringing to make an appointment? This
Special Care Dentistry is only open 1 or 2 days
a week, so no good if ring other days parent
Treatment finally arranged by personal
intervention of MP father
When you phone the switchboard, they have
never heard of it. Because its not always open?
or is it one of those things you dont talk
about? parent
special needs dentistry?..... Never heard of it
The responsibility to access dentistry is very
much with the patient and this is difficult for
people with LD who lack the skills. A more
proactive approach from services to reach out to
vulnerable people is needed particularly with
health promotion Community Learning Disability
Team member
4
Getting there
Its a problem parking . . . .
I would like to be registered with an NHS
dentist closer to home patient
I'm sometimes late for my appointment because
its a long way to walk patient
. . . And when youve got someone with no road
sense, you cant get in there mother
When you go to hospital there are no
signs parent
We preferred the situation that existed prior
to mid 2002. Check ups at the hospital present
us with problems.He needs to be kept home for
the day.It requires both of us to be available
for transporting him. Parking at the hospital
can be a big problem. We like other carers are
no longer spring chickens and find difficulty
transporting James and a wheelchair mother
5
Restraint . . . . . . or a helping hand?
If he refuses,we cant force him Dental staff
please dont lean on me patient
Its a health and safety issueparent