Stories 4 - Life with TS
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 Tourette’s is that it doesn’t 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 didn’t 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 doesn’t always happen,” she added. “Some doctors just keep on saying, ‘Oh, don’t 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 Melanie’s case it was Obsessive Compulsive Disorder (OCD), but children with Tourette’s often have Attention Deficit Hyperactivity Disorder as well,” explained Jane.
Examples of Melanie’s obsessive behaviour include repeatedly watching the same video, refusing to use a sheet of her notebook because “it doesn’t 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 she’s 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 girl’s throat began to bleed, violent sniffing and eye rolling.
It is awful when they happen in public,” said Jane. “Melanie can’t do anything about it — it’s incredibly distressing for her, and she can get into a real state. She tries to hold onto the tics, but sometimes it’s just impossible. People get angry and irritable, and tell me to make her stop whatever she’s doing. If only they could see that she can’t stop, and there’s 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 you’re not allowed to blink takes over, and it’s all you can think about,” she said. “Eventually, when you finally do allow yourself to blink again, you find you just can’t stop.” And that, she said, is what it is like for a child with Tourette’s. “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 can’t 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 she’s making or what she’s doing, we’re OK with that, she’s 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 wouldn’t 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 it’s not about bad parenting, or having badly-behaved children. Melanie isn’t naughty — she can’t help the way she behaves. It’s an illness, beyond her — and our — control.”
Melanie has few friends at school. “Some of the kids have told her she’s ‘mad’ or ‘brain damaged’,” said Jane sadly. “It’s 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. “We’re already seeing signs of it getting worse,” said Jane. “We had a whole year when Melanie wouldn’t 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 of specialists 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 Trust’s 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 weren’t happy with the initial assessment,” said Jane. “It only lasted 10 minutes, which we felt just wasn’t 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 Tourette’s, 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 they had 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 daughter’s 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 girl’s treatment, the Smiths also got a letter of assurance from the Trust’s chief executive that the Sleaford consultant would speak to the TS specialist and would consult him about their daughter’s 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 family’s anguish increased, she said, when they were told the local psychiatrist was now in charge of their daughter’s 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 patient’s 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 wouldn’t treat someone with a major heart problem, so a psychiatrist shouldn’t 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.”