The following 2 articles appeared in the
Sleaford Target newspaper in November 2000
Living with Tourette Syndrome
Nine-year-old Melanie Smith, who lives with her parents John and
Jane on the edge of Sleaford, was diagnosed with Tourette Syndrome when she was six
but what IS Tourette Syndrome? TS is a neurological disorder that strikes around one
in 1000 children, usually between the ages of six and nine years, although it has been
known to occur up to 21 years of age. It is more common in boys than girls, and
manifests itself as tics involuntary movements of the face or body.
Tics can also be verbal, and although these are in fact less common than physical (called
motor) tics, they are usually what people associate most with TS because of
the disturbance and disruption they often cause in public.
Said Jane: Transient tics are very common in children, and in
most cases the child grows out of the tic. The difference with Tourettes
is that it doesnt go away. When a child first presents with the condition, common
signs are rapid blinking, sniffing and face pulling. Healthcare professionals usually
begin investigations for TS if these have gone on for over a year.
Jane said she first realised something was wrong when Melanie was
five. At nursery school she did funny little things, but I didnt really take
any notice, she told the Target. Then, when she was five, she started having
violent tics that affected her whole body, and she also began hissing. You couldn't miss
it.
The family doctor in Sleaford, said Jane, was wonderful,
taking the condition seriously from the start. That doesnt always happen,
she added. Some doctors just keep on saying, Oh, dont worry. She'll grow
out of it.
When Melanie showed no sign of growing out of it, the doctor
referred the little girl to a specialist. Melanie, it was discovered, had a form of
TS called Tourette Syndrome Plus, where another condition runs alongside the TS. In
Melanies case it was Obsessive Compulsive Disorder (OCD), but children with Tourettes
often have Attention Deficit Hyperactivity Disorder as well, explained Jane.
Examples of Melanies obsessive behaviour include repeatedly
watching the same video, refusing to use a sheet of her notebook because it doesnt
look right, repeating for days on end a phrase or gesture she has seen or heard,
and, on one occasion, a compulsion to re-buckle her shoes every two steps. The
20-minute walk home from school took an hour and a half, recalled Jane.
Tics, too, change frequently, and can lead to misery and even
physical injury to the child. I have to watch her when shes at home,
said Jane. She has fallen down the stairs twice in the last few weeks.
Other tics that have affected Melanie include sharp gasps, which have led to frightening
choking episodes, snorting, which became so severe that the little girls throat
began to bleed, violent sniffing and eye rolling.
It is awful when they happen in public, said Jane. Melanie
cant do anything about it its incredibly distressing for her, and she
can get into a real state. She tries to hold onto the tics, but sometimes its just
impossible. People get angry and irritable, and tell me to make her stop whatever shes
doing. If only they could see that she cant stop, and theres nothing I can do."
Trying to stop a tic, said Jane, is like somebody trying not to
blink. You can do it for so long, then the fact that youre not allowed to
blink takes over, and its all you can think about, she said. Eventually,
when you finally do allow yourself to blink again, you find you just cant
stop. And that, she said, is what it is like for a child with Tourettes.
Melanie holds it in quite well at school, but then she just explodes when she gets
home, said Jane. She really struggles to hold the tics in, but after school she
just cant stop.
The family has become used to ignoring the tics, allowing Melanie to
make whatever sounds or gestures she needs to. She needs somewhere safe where she can
tic, said Jane. She knows that, no matter how much noise shes making or what
shes doing, were OK with that, shes in a safe and loving
environment.
Tourette Syndrome, and the more commonly diagnosed Attention Deficit
Hyperactivity Disorder, are misunderstood by most members of the public, said Jane.
People think the child is just naughty, and you hear comments like: He
wouldnt do that if he were mine, or She needs a good smack, said
Jane. You can also see people thinking what a bad parent you are, letting the child
carry on like that. But its not about bad parenting, or having badly-behaved children.
Melanie isnt naughty she cant help the way she behaves. Its an
illness, beyond her and our control.
>Melanie has few friends at school.Some of the kids have told her shes
mad or brain damaged, said Jane sadly. Its very
difficult for her. One day she was watching something on television, and she turned her
face up to me and said: I wish I had a best friend. I could have cried for
her.
As Melanie gets older, said Jane, her tics are likely to die down,
although it is uncertain whether they will ever disappear entirely. But, as the tics fade,
the obsessive compulsive behaviour is likely to get worse. Were already
seeing signs of it getting worse, said Jane. We had a whole year when Melanie
wouldnt go into the back garden because she was convinced someone was waiting
outside to shoot her. When she was younger, she would be tormented by obsessive
thoughts, and would run around clutching her head, tearing at her hair and begging us to
stop the thoughts, said Jane. There was absolutely nothing we could do, and
watching her suffer was heart-breaking.
Melanie is likely to spend the rest of her life in the care ofspecialists and nurses, said Jane.
Medication helps a bit, but the condition will never go away.But if telling
her story means that even a few people will have a greater understanding of children like Melanie,
and show more compassion, then it will have been worth while.
For more information on Tourette Syndrome, there is a TS Association
Helpline: 01892 669151, or visit their website at www.tsa.org.uk
Tourette Syndrome
A SLEAFORD family has hit out at a local health authority amid
claims that their daughter was denied access to a specialist. The couple, who have asked
not to be named, say they are very concerned at the way they have been treated by the
South Lincolnshire Healthcare NHS Trusts child and adolescent psychiatric unit.
John and Jane Smith not their real names are both
mental health nurses with over 30 years experience between them. Jane, a former ward
sister, now stays at home to care for nine-year-old Melanie, who has a rare condition
called Tourette Syndrome. But they say they are shocked at the standard
of care Melanie has received in this area, and are anxious for other, less well-informed
service users to hear their story.
Melanie was diagnosed with the condition when she was six, her mum
Jane told the Target. The GP was wonderful, and took it seriously from the start
we were very lucky, she said. But things began to unravel after Melanie
was referred to a psychiatrist at Rauceby: We werent happy with the initial
assessment, said Jane. It only lasted 10 minutes, which we felt just wasnt
long enough to properly assess her condition.
By now, the family had obtained a list of specialists from the
Tourette Association, and were relieved when their GP referred them to a doctor in
Birmingham who specialises in TS. Melanie began seeing him three years ago.
We were more than happy with the care she was getting, said Jane. All
the treatment and advice he was giving tied in exactly with the books we had read on the subject.
A recent book by world-renowned TS expert Mary Robertson, Professor
of Neuropsychiatry at University College, London, states that children with the condition
must be treated by a specialist who knows about Tourettes, said Jane. But
after three years of specialist treatment and advice from the doctor in Birmingham, the
family was told they would have to see a local psychiatrist if they wanted to access
nursing care for Melanie. We were worried that the health authority would try
to stop us seeing the specialist, said Jane. It seemed ludicrous that one
child should see two consultants to treat the same disorder while other children are on long
waiting lists, seeing nobody.
John and Jane took their concerns back to their GP, telling him theyhad been told to see a local psychiatric consultant
who did not specialise in TS. He referred us to the local service on the strict
understanding that the specialist remain in charge of our daughters care, and that
we continue to see that specialist regularly, said Jane. She said the local
consultant also assured the family that this would happen, and promised to see the Smiths on
these terms. Concerned that the two doctors might not agree on the little
girls treatment, the Smiths also got a letter of assurance from the Trusts chief
executive that the Sleaford consultant would speak to the TS specialist and would consult
him about their daughters care. But they say that, instead, they were given
advice by the local psychiatrist that completely contradicted that of the specialist
and was different from anything they had previously read or been told about TS.
We were advised to do things we had been expressly told not to by
the specialist, said Jane.For example, the specialist told us to ignore the
tics when Melanie was at home, because she needs somewhere where she can feel safe.
But the local psychiatrist told us to draw her attention to them, talk about them
it was completely conflicting advice. And she says the family also
discovered that the local consultant had not spoken to the TS specialist, and had not
consulted him before giving them advice. He only spoke to the specialist after
we complained, said Jane. The familys anguish increased, she said, when
they were told the local psychiatrist was now in charge of their daughters care
and they were no longer allowed to see the specialist at all.
The new Patients Charter puts great emphasis on working with
the patient, and stresses that the patients wishes must be taken into consideration
when making decisions about treatment and care, said Jane. Our wishes were
completely disregarded, and promises made to us were not kept. Removing our
daughter from the care of the specialist was exactly what we were promised would not
happen. We were devastated and furious, she said.
Worst of all, our daughter was left in the care of a doctor who knew little about
her condition, and who was giving us advice we felt we could not trust as it completely conflicted
with that of an expert.
Now, following advice from the NHS Direct helpline, and with the
backing of their family doctor, the Smiths have succeeded in their bid to be seen only by the
specialist. The GP again backed us, and fortunately the specialist was happy to take
Melanie back under his care, said Jane. But she says others might not be so
lucky, and might have to put up with less than the best care. And the couple are
also angry that they have received no satisfactory explanation or apology from the South
Lincolnshire Healthcare NHS Trust. Said Jane: I am sure the local psychiatrist
is very competent, but just as a family doctor wouldnt treat someone with a major
heart problem, so a psychiatrist shouldnt attempt to treat something like Tourette
Syndrome, which needs to be dealt with by a specialist in the disorder.
A spokesman for South Lincolnshire Healthcare NHS Trust said:
We can confirm that we are in discussion with this lady regarding her complaint
about some aspects of our services. The lady first complained to the Trust in September
1999, and we have been working with the complainant to try and resolve the concerns she
raised. We believe that our complaints procedures have been adhered to fully,
and the complaint has been referred for independent review. We are very sorry
if she feels that we have not responded to her complaints satisfactorily, but we will continue
to work with her and her representatives to try and resolve the outstanding issues about
which she remains concerned.